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|Posted By : turquoisegirl - 10/23/2007 11:05 AM|
I am new here having recently realised I appear to be very intolerant to sulfites (sulphites) in food, having been on antihistamines from the doc for years (who just says I am Atopic gives me the antihistamines and won't send me for tests as he says there could be too many things I am intolerant to!)
I would so love to hear from others who have this... I am eating 20 fairly "safe" foods at the moment but am finding it sooo boring! But at least it has removed most of my symptoms and I feel so much better.
I am adding back a little of one item of food at a time to see what happens but am finding this quite scary because as soon as I eat something that has any sulfites I get really itchy prickly skin and really really bad indigestion and a tight throat/chest.
I had never even heard of sulfites until recently.
I would really love to hear from anyone else who has this problem... how they cope, what they find they can eat etc.
|Posted By : Razzle - 10/24/2007 7:24 AM|
Yes, I too am sulfite sensitive. The enzyme in the body tissues that processes sulfites is called Sulfite Oxidase. This enzyme requires certain nutrients in order to function correctly, otherwise the probability of a reaction is high. These nutrients are: Vitamin B12, Zinc, Magnesium, Iron, and Molybdenum. Vitamin B1, B6 & Folic Acid are depleted by excess sulfites so you will need to supplement these also. If you take a daily multi-vitamin/multi-mineral supplement, that should be enough for everything but the zinc and B12. Those will require a separate supplement. I use an oral spray Vitamin B12 (methylcobolamine - lacks the toxicity of cyanocobolamine) several times a day and I also get the injections (can't absorb B12 in my gut due to chronic gastrointestinal dysmotility and inflammation) of methylcobolamine. Also, you will need to inform your doctors that most topical anasthetics have unlabeled sulfites in them (carbocaine is safe).
Here are some links you may find interesting:
http://www.pubmedcentral.nih.gov/picrender.fcgi?artid=1307260&blobtype=pdf (since this article was written, sulfites have been banned on salad bars, but food manufacturers use sulfites on many foods, and some foods have naturally occurring sulfites).
The general rule of thumb is that the less the food is processed, the lower the sulfite content (usually). My own diet is restricted by other issues (food allergies, etc.), so I won't get into too much detail. To avoid sulfite reactions, I find that I need to avoid things with sulfites clearly listed on the label, as well as things containing corn syrup, high fructose corn syrup, corn starch, vinegar, lemon juice concentrate, citrates, sorbates, etc. I try to keep the ingredient list as short as possible.
I hope this is helpful. Take care,
Gluten & Sulfite Sensitivity, Multiple Food & Inhalant & Medication Allergies, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD (Lupus?), Osteoporosis, Anemia, Very Low Lymphocyte Counts (T-Cells & B-Cells), malabsorption/malnutrition, etc.
Meds: Pulmicort, Injectable Vitamin B12, Herbs, Nutritional Supplements, Essential Oils, Homeopathy.
|Posted By : turquoisegirl - 10/24/2007 8:07 AM|
Thank you so much for replying.
Sorry to take up your time but could you please answer a few questions.... don't worry if you don't know the answers.
a) Do you find oral medicines with sulfates ok? I understand from research that sulfite oxidase changes the sulfite into sulfate... so if it is already sulfate is it ok? I ask as I used to take glucosamine sulphate (with potassium sulfate)..I was reacting so much to lots of foods so I never worked out if this was one of the problems and it all but cured my embryonic arthritis problem... I am ok at the moment but I may need to take something in the future and I found the sulfate helped more than the hydrochloride.
b) If my body isn't converting the sulfite into sulfates is this not likely to cause a sulfur deficiency? The articles I have read about sulfur deficiency sound awful!
c) I have already purchased some sublingual B vits including B12 but not taken them yet.... the B12 is cyanocobalamine.... is the toxicity likely to be a problem if I take it in the short term until I find the methylcobolamine?
d) I have also read that biotin in vit tablets has high sulfite... this seems to be in most of the multi vits I have looked at... I have stopped taking my usual brand due to this. do you find this a problem?
e) What dose of molybdenum do you take? I have read about this causing a copper deficiency.... (I read far too much)....
f) do you have problems with tea in tea bags and cheese... I have cut them out temporarily as tea is fermented and cheese is preserved (you can tell I am really not sure that I am doing at the moment)
Unfortunately as I live in England there doesn't seem to be the same rules here about labelling sulfites.... and no-one else seems to have any idea what I am talking about....I had my Eureka moment when I had a really bad reaction to a packet of gummy bears (gelatine!) ...i ate the whole pack!!! which were made in Australia and were labelled. I googled it and the jigsaw fitted together... I had already isolated onions, grapes, I have always hated any vinegar products so was already on the way. I feel so much better now that I have cut out anything obviously sulfited... I am actually awake and alert and can even walk up and down the stairs better, I don't feel such an old lady any more....my itching has almost gone (still get a few bouts but have found you can't avoid all sulfites), and my bad indigestion /wind has gone.
I am on a self imposed elimination diet at the moment but feel so much better I really am reluctant to try out other foods and make myself feel temporarily ill. But I know I have to do this to find out what I can eat as my diet is so restricted at the moment.
I have had dental surgery about 3 months ago with lots of injections... so seem to be ok with my dentists brand of anaesthetic... but will ask her to let me know if she changes it!
I am so sorry to bombard you with questions... I am sure you have much better things to do!Thanks so much for your time.... you are the first actual person (rather than looking at websites) I have communicated with about this.
|Posted By : Razzle - 10/24/2007 5:41 PM|
|http://www.fedupwithfoodadditives.info/factsheets/Factsulphites.htm has some excellant info.|
http://www.buyusa.gov/spokane/euallergenregs.html says that the EU is starting to require sulfites be listed on packaged food labels. So you may be able to report companies for non-compliance...something to look in to, anyway. There should be a code on the food label that corresponds to each additive, but I wasn't able to locate a list online in a quick search. The additive codes typically start with an E and have 3-4 digits after the E. I think sulfites (also spelled sulphite) have a separate code for each type of sulfite.
http://www.google.com/Top/Health/Conditions_and_Diseases/Allergies/Food/ is another interesting site...
I have to be careful with sulfur in general. I have some kind of a sulfur intolerance (allergic to Sulfa antibiotics, have difficulty tolerating foods known to be high in sulfur, can't have iron sulfate) in addition to the sulfite sensitivity, and do find I react to sulfates in some cases.
If your body wasn't converting sulfites into sulfates, you'd probably be in the hospital. True sulfite oxidase deficiency is hereditary and usually fatal. However, there can be deficiencies of sulfite oxidase that don't completely eliminate the enzyme and that I believe is where the problem for those of us with sulfite sensitivity lies. We thus must be careful to reduce our exposure to sulfites, while at the same time supporting the function of what sulfite oxidase enzyme we do have. Also, there are other reasons for the sulfite oxidase enzyme not working as it should - nutritional imbalances, heavy metal toxicity, allergies, air pollution (car exhaust has sulfur dioxide = sulfite), effects of certain medications, etc. can all affect how the sulfite oxidase enzyme functions. How carefully you need to pay attention to all this depends on how sensitive you are to sulfites - if you can only eat something if it has less than the detectable amounts of sulfite (10ppm or 10mg...can't remember) you'll have more difficulty than if you only need to worry about things with more than 50ppm/50mg of sulfite.
The sublingual B12 cyanocobolamine should be fine short-term. The toxicity issue is only a problem with long-term high-dose supplementation. You may also find that you can reduce your B12 intake after a while of high dose supplementation. I was getting shots weekly but after about 9 months, could finally space them out more (I'm down to 1 shot every 4-6 weeks).
I have trouble with multi-vitamin supplements for other reasons, but I seem to do ok with biotin by itself... Because there are 6 different forms of sulfites, I may not be sensitive to all 6 forms, or my sensitivity level may vary for each of the 6 forms of sulfites. That said, I also am getting the B12, so maybe that is keeping me from reacting terribly. Also, sulfite sensitivity is cumulative, so you may find you do ok one day with a particular food/supplement, but the next day you can't handle it. This is because it can take 24-48 hours for enough sulfite to accumulate to trigger a reaction. So there is a moving window of 48 hours that influences your total sulfite exposure. If you stay below your triggering threshold amount during any given 48 hour period, you won't have a reaction.
I actually overdosed on Molybdenum (blood test showed very high levels), so I don't supplement with it anymore. I used to take 500-1000mcg/day. Excess copper can displace zinc in the sulfite enzyme, so make sure you are getting a balanced amount of these two minerals... Estrogens (estrogenic foods are soy, chocolate, some other foods) promote excess copper in the body, also, so most women have fewer difficulties with copper deficiency than men. This answered the question as to why chocolate bothers me during my cycle but not any other time of the month (when eaten in moderation).
Tea is a big problem for me - partly because of the tea bags (loose herbs can be used instead with your own stainless steel strainer), and partly because of other allergies/intolerances/sensitvities. Caffeine really bothers my stomach, so I avoid black tea and other caffeine sources. I seem to do ok with occasional green tea, if I only drink a little bit and dilute it with water.
Tap water is another potential source of sulfites, so I have to avoid it (also the chlorine and other additives bother me). I also can't drink water that has been passed through carbon filters, as the carbon is often derived from coconut charcoal and the coconut is sulfited if it isn't organic. For water, I drink a certain brand of bottled water. I'm ok brushing my teeth with tap/filtered water as long as I rinse out my mouth afterwords with the safe bottled water.
Fermented foods in general are high in sulfites - yogurt, buttermilk, cheese, wine, vinegar, tofu (my worst reaction ever was from tofu because I'm also allergic to soy), miso, soy sauce, etc. can all cause reactions, depending on your level of sensitivity. I do ok with yogurt if I am faithful about my B12 supplements.
There's no such thing as reading too much. It is far better to be an informed, educated person - knowledge equips you to participate actively in your own health.
Sulfite Sensitivity is considered rare (the US FDA thnks only 1% of the population is sulfite sensitive), but I think it is more common than the medical establishment believes it is. Unfortunately, there are no tests for sulfite sensitivity that will find every case of sulfite sensitivity. While sulfites can trigger mast cell degeneration independly of IgE antibodies, a person can also have antibodies to the Sulfite Oxidase enzyme (seen in some liver diseases). Also, sulfite accumulation due to insufficient sulfite oxidase enzyme function and/or quantity can produce the familiar symptoms we experience with our reactions (mine can be anything from a mild headache or sore throat to anaphylaxis, but most commonly are acid reflux that doesn't respond to acid reflux treatment, and nausea). Vitamin B12 and the appropriate nutritional supplementation can increase tolerance (increase the threshold of reactivity) to sulfites if the enzyme is where the problem is, but the only thing that will stop a sulfite reaction if it is allergic (i.e., sulfites making mast cells degenerate) is a combination of Vitamin B12 (binds directly to sulfites, rendering them inert) and antihistamines.
Feel free to ask more questions - I don't mind answering them.
I hope this helps - take care,
Gluten & Sulfite Sensitivity, Multiple Food & Inhalant & Medication Allergies, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD (Lupus?), Osteoporosis, Anemia, Very Low Lymphocyte Counts (T-Cells & B-Cells), malabsorption/malnutrition, etc.
Meds: Pulmicort, Injectable Vitamin B12, Herbs, Nutritional Supplements, Essential Oils, Homeopathy.
|Posted By : turquoisegirl - 10/25/2007 1:28 PM|
Thanks so much for replying again.... your info has been really helpful. So nice to communicate with someone who understands. Everyone seems to think I am just being neurotic here.... but they don't feel the sypmtoms so i can't really expect them to understand.
My intolerance problems seem small compared to yours.. it's true that when you feel sorry for yourself there is always someone worse off! (I only felt a little sorry for myself yesterday evening walking past all of the yummy things in the supermarket I can no longer eat!!!!!
I now need to concentrate on the things I can!
I don't have any more pressing questions as the moment but will certainly come back again if I do... thanks.
I am going to list my symptoms here (you don't need to read on!!!) As this thread will be picked up on a search for some time it may help others trying to find out what is wrong with them!
graphoderma (not sure if this is the correct word... it means able to write on the skin... if you run something light across the skin it leaves a read mark/wheal)
Very Very itchy skin... with redness and prickling mostly on the legs but also elsewhere
Extreme fatique/tiredness- I described it as "zonking out"... after eating some things about an hour or two later I would just sit down unable to move or do anything for a while and then feel sluggish with "brain fog"
tightness in throat and chest
feelings of "doom"/anxiety
bad indigestion....a distinct pain between the shoulder blades followed by a lot of gas/burping... followed the next day by stomach cramps
stuffy nose/blocked ears
The symptoms don't always all come at the same time... some foods cause the itching, some the indigestion, some the tiredness, some all of them.. eg .
grapes give me bad indigestion but no itching, white flour gives me both itching and indigestion. I assume it depends on the type of sulfite as there are 6.
My symptoms often seem to start about 1 to 3 hours after eating the offending food. I am not sure if I am getting any delayed reactions... I haven't got that far with introducing new foods yet.
I definitely react badly to onions, garlic, dark chocolate, vinegar, white flour products, eggs,grapes, gelatine .. many of the items on the sulfited list are things I have refused to eat from childhood... my body obviously knew something that I didn't! I have always had a real dislike... almost phobia... of the smell of anything with vinegar in it (it smells like dead bodies with a sharp tang to me!!!!!! my daughter thinks it smells nice!!!!!!!!!!!) I can't stay in the room if anyone has vinegar or tomato sauce on their food! it makes me feel sick.
I have always refused since childhood to eat jams, dried fruit, fish, salad items (I even hated onions in childhood... but started to eat them as an adult)
I detest the smell of garlic when someone else has eaten it and when my husband has eaten a lot of garlic or onions I wake in the morning I with badly puffy and stinging eyes... I guess that he is breathing out the sulfite gas.
Since cutting out all sources of sulfites that I am able to of most of the symptoms have eased.... I feel much better...I still have the stuffy nose and blocked ears.... but that could be dust mites or my cat!
I am still getting mild indigestion at times and occasional bouts of itching but it seems to be impossible to cut out all sources of natural sulfites... they seem to be in soooo many things!
Thanks again to Razzle
|Posted By : Texani - 8/29/2009 7:26 PM|
|Hi...I am also new here and joined because I saw your question about sulfite allergy testing. From everything I've been able to find out, there is no test for sufites.
In my case, I live on the Gulf Coast and was evacuated during a major storm. We had still not been able to return home, but I had come in for the day to help out. All we had to eat were FEMA issued MREs and past of mine was dried cranberries. I ate some and started feeling funny, and then reached up and felt that my neck had ballooned. There were no EMS services back in place yet, but somone told me that a nearby hospital has opened their emergency room on generator power that day. By the time I got there, I couldn't find the door..or even make it out of my truck. A nurse parked nearby and I honked and waved, and the minute she saw me called for help.
All the hospital knew was that it was Anaphylactic shock with no idea what caused it. The doctor there did tell me that another episode would probably kill me, and I was put on steroids and Benedryl.
I had to do my own sleuthing to figure out what the problem was, and of course it was the sulfites in the dried fruit. But then I started learning about sufites and how they pervade most of what we eat.
I am beyond careful...I take an allergy pill everyday and supplement that with Benedryl, but still have bad reactions to many foods. It doesn't seem to matter how carefully I read the listed ingredients, I am regularly and unpleasantly surprised again and again.
I wish there was some encouragement I could give you, but it's a gamble every time we eat. Retaurants buy things in such quantity that I am certain they have no clue. To tell you how bad it is, I was recently hospitalized for kidney stones...and made sure ALL my info had a sulfite-allergy alert on it and WHAT did I get served every day, twice a day? Jello!
Each of us are so much on our own with this, and we can take nothing for granite. Now I am finding out that shampoos and body lotions often contain sulfites.
|Posted By : NaomiAnn - 12/14/2009 12:42 PM|
|Hi I'm another new member. I too am allergic to sulfites(just been diagnosed in the last month) and am still trying to digest all that has to take place. I had no idea how many things contain sulfites. The fact that the word sulfite doesn't have to appear on a food label to actually have sulfites in them. I have started a list of foods that I can have and am realizing that I am going to have to bake from scratch almost everything. That is not a bad thing but it requires alot of time and planning. Eating out has pretty much gone out the window and that is hard. In the last 2 weeks I have lost 10 pounds and need to start eating more. I hope that I can be an encouragement to others as I start this new journey and I hope I can receive encouragement and support too.|
|Posted By : couchtater - 12/15/2009 7:16 PM|
|I know another poster who's on the GERD forum who's allergic to Sulfites.|
Her name is Alcie. You can talk to her also. She has a very extensive list posted.
|Posted By : KTalbs7 - 12/23/2009 3:52 PM|
|Though I haven't been "diagnosed" with a sulfite sensitivity/allergy, I have been dealing with chronic headaches for years, and just recently discovered that sulfites may be the problem. Since high school I've had headaches almost daily, some I know are caused by stress, some by dehydration (I'm an athlete so I am always working out and sweating), and many others were what I considered to be sinus headaches, because I had severe pressure in my forehead, nasal discomfort, some congestion, etc. The past couple of years the symptoms have gotten worse and worse, and this past summer/fall became a daily severe problem that has interfered with my life. In addition to the headaches, I now have hives, flushing of the face, especially my nose to the point that I carry a thermometer around with me because I often feel like I have a fever, a horse/scratchy voice, stomach pains, heart palpatations, dry scratchy throat, dizzyness, blurred vision, a bad sense of fogginess and at times, depression. In the past year, I have been to an ENT, physical therapy, psychiatrist, chiropractor, had a CT scan, MRI, allergy testing, thyroid testing, ADHD testing, adrenal tests, and always the same results: nothing (except for the ADHD, I was diagnosed last spring). As relieved as I am to not have something seriously wrong with me, I've been extremely frustrated that not only can no one figure out what's wrong with me, but I'm pretty sure some of my friends and family think I'm a hypochondriac and that I'm making it all up! I am currently on a no coffee/wine/beer/chocolate/artificial sweetener diet per my allergist, which started before Thanksgiving (great way to go through the Holidays, ugh!). I drink pretty much only water at this point, but I used to drink coffee, diet coke/pepsi and iced tea pretty frequently. The other day I had a cup of hot cider, and within two minutes of taking the first sip, the headache and sinus pressure that had been pretty good that day came on immediately. I thought that was strange... I used to drink cider all the time without problems, so I decided to do a little research, and ended up reading a lot about sulfites. It was like I was reading my own biography in some ways when I read the symptoms and lists of high-sulfate foods... especially guacamole/avocados, grapes, high fructose corn syrup, etc that I consume on a DAILY basis!
I have an apointment with my allergist next week as a follow-up to the diet I'm on now, and I'm anxious to bring my "discovery" of sulfites up to him. I'm just hoping that if this is my problem, he can help me figure out what I can eat, because after doing research and looking at many many food labels the past few days, it seems as though I am extremely limited in my choices.
Any advice, information, or help that anybody could give me would be greatly appreciated! Thanks for reading my somewhat long-winded story!
|Posted By : dfarris - 3/1/2010 1:24 PM|
|This is my first time posting. I called in sick from work today due to what I will call" sulfite poisoning." Having said that, and as many of you already know, it is difficult sometimes to diagnose why you feel so poorly. Especially when you have multiple allergies/intolerances. Approximately 12 years ago I was diagnosed by a Naturpathic/MD with a food allergy. Her diagnosis took about 30 secs. after she heard my symptoms. This was after many visits to traditional docs that, after hearing my symptoms, wanted to perscribe depression medications to me. Urgh!! (Who wouldn't be a little depressed when you feel poorly 1/2 your life.) Once it was confirmed that my symptoms* appeared to be food related I went on the elimination diet. http://www.everydiet.org/diet/elimination-diet
My initial symptoms (symptoms vary from person to person):
- puffy eyes (looked almost like a large mosquito bite on my eyelid and under my eye)
- headaches (not a typical headache but an all-around-pressure headache; often lasted for many days to a week)
- extreme tiredness after eating (especially after a sandwich....therefore suspected gluten)
- watery and oily looking stool
- fuzzy thinking
- irritable and agitated
When I started my elimination diet I already suspected gluten was the culprit. But was also suspicous of dairy. After many weeks of testing I confirmed gluten and dairy was the problem food. However, later I learned that once I was gluten free I could then tolerate dairy. (halajujah!)
I was relieved to be finally doing something about my situation as I was tired of being sick and tired. But I must add that there is a gluten mourning period that I went through. But after a couple of episodes of denial and feeling sorry for myself, meaning I actually thought I could eat a little gluten, I decided no amounts of gluten was worth the misery. I have been gluten free for 10 years. I was substituting using corn, tapioca bread, rice, etc. But as luck would have it a year or so ago I started feeling the same/similiar symptoms. I then discovered I could no longer eat corn. What the **** is going on! And last thursday I ate some soup my daughter fixed and it has been down hill ever since. My daughter, 23 years old and just graduated with a BS in food sciences and dietetics. She is well aware of what foods I can't have and is great about reading labels. She is very careful and I trust her cooking. The soup was a coconut milk/curry soup with prawns and different veggies and cool asian mushrooms (don't remember the spcies name). I packed the soup in my lunch bag to eat at work and it was amazing. However, soon after consuming it (Thursday afternoon) I started feeling that lethargic/sleepy feeling I used to get when eating gluten. I was tired all night and had a slight headache. (I should mention that I had approx. 6 oz. of red wine when cooking dinner that night. I know some of you food allergy/intolerance experts know where this is leading.......) I woke up with a slight headache and slightly swollen eye the next morning. I haven't been in denial about food for many years but I was in denial and decided that I could have this amazing soup again the next day (Friday afternoon) for lunch; so I did. My thinking was clearly very fuzzy on Friday afternoon making it quite difficult to be efficient at my job; building technology specialist. (That eveing I had another small glass of wine that evening....maybe 4 oz.) I told my signigicant other that evening that I was so tired I felt like I had weights on my legs. I went to bed early. Amazingly enough I woke up feeling pretty good. However my eye was still slightly swollen. I was planning on taking the dog for a walk and decided to take the dog to the porch and brush him first. After brushing him I stood up and almost passed out. It was all I could do to catch myself from hitting the ground and barely caught myself soon enough to plop down on the porch step. I wrote it off as' I simply got up too quickly.' However, the dizziness has not gone away for 3 days.....it subsides only to return. At night when I turn over the room is spinning. This is a new symptom for me. Although some dizziness would accompany food intake episodes in the past it never has come on so suddenly. I'm still in self-diagnosis stages of this situation and have also scheduled 2 doc appt. My self diagnosis is toying with the idea that I had a reaction to the sulfites. The coconut milk listed sulfites which means there is at least 10 parts per million. (The new labeling regulation--which
goes went into effect Jan. 9, 1987--further defines when the presence of sulfites must be declared in a finished food. Any food that contains at least 10 parts per million of sulfites must identify the sulfite in the ingredient list on the label. ) My 1st appt. is today with a general pract.; just to make sure nothing life-threatening is occurring. My family has a history of diabetes and I want to have this checked. My next appt. is Wednesday with a Naturpathic - ND. The ND was the person who originally diagnosed my issues.
Note: In addition to the symptoms I listed as experiencing in the last few days I've also have experienced a tight chest. This is usually a symptom that accompanies my asthma (only slight case) and surfaces during stress, ingestion of foods I can't tolerate, exposure to fumes (stains, urethanes) and dust. (I should mention that our house in under construction and I am frequently exposed to these things.
Having said all that I want to make a few things very clear to those of you that have or or suspects food allergies/intolerances:
- You must keep records and document your findings regarding food intake and reactions symptoms and reaction times
- Hopefully you can find an appropriate doctor to present your documentation to (trust me this isn't easy)
- You must listen carefully to your body
Last year I went to Virginia Mason to see one of the 10 top allergists in Seattle and was reviewing my scratch test allergen results. (Only showed hazelnuts<results =slight allergy reaction> and tree pollens <higher reaction> as items I was allergic to.) I couldn't believe that wheat, corn, barley, etc. etc. did not show results. I asked the doctor (remember....a top 10 allergist in Seattle) "How can I have such severe reactions to a food yet not show any allergy results to them." After some pressuring her reply was, "we are just not there yet." I left feeling quite defeated.........this truly is a journey I need to take by myself. Sure your family and friends can support you.....but in the end it is up to you.
A couple of quick thoughts that may help you in other areas:
- Be careful of medications (dentists, surgeries)
- Be careful of the intert ingredients in medications.
I have had a horrible reaction to chephalexin (antibiotic) and was the only person leaving after a colonoscopy with a puke bucket. (I still need to investigate what was given to me then.) I also identified that there is an anesthetic that I cannot tolerate (nausea) that the dentist commonly uses. The dentist tried something different at the next visit which agreed with me and killed the pain.
I could go on and on as there are many things I have not covered. For instance, my recently acquired corn intolerance....symptoms are different that the gluten intolerances. Feel free to ask me questions if you have any. I find these type of sights to be a great way to find out info about intolerances and allergies. I find more info here than most docs have to offer.
Bottom line for me.....pure and natural foods. I need to quit hoping and experimenting.....it is never worth it.
Take care of yourselves. Life is not a dress rehearsal. DF (PS - I'm not editing....takes too long. I'm sure you don't mind if there are a few typos.)
|Posted By : kimber9807 - 3/1/2010 4:45 PM|
|I dont know about sulfites in food. but Im allegic to sulfa drugs . I break into a rash and have a hard time breathing.|
im dxed with herniated discs,fibromylagia , scolosis,ddd,athritis, spinal stenosis ,gerd,gastric ulcer,gastroparesis and aslo gallbladder disease aka biliary colic.
meds:bentyl,zofran aciphex ,ambien and trazodone.
|Posted By : Jpdave13 - 3/18/2010 10:11 PM|
|Posted By : Jpdave13 - 3/18/2010 10:12 PM|
Could you please share with us the 20 foods you can eat?
|Posted By : Razzle - 3/23/2010 6:03 PM|
|Sulfite allergy/sensitivity is not the same thing as sulfa drug allergy - they are two completely different forms of sulfur.|
More sulfite info:
Nutrigenomic testing can help determine where in the methylation cycle (metabolic cycle of which sulfite oxidase is a part) one is out of balance based on genetic variants. See http://www.heartfixer.com/AMRI-Nutrigenomics.htm Nutritional supplements can be used to compensate for these genetic variants.
Chronic Lyme Disease, Chronic Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, chronic Lymphopenia, etc.; G-Tube; Currently weaning off TPN.
Meds: Pulmicort, IV Doxycycline, Heparin (to flush PICC line), Claritin, Singulair, Domperidone, Colloidal Silver (topically & nasally), probiotics, Liver support herbs, Ailanthus, digestive enzymes, homeopathy.
|Posted By : Ashleyboo - 8/20/2010 11:26 AM|
|Hi my son is 2 he has just had a skin test in london and it came out pos for sulphite allergy i know this is a new test out. I have removed sulphite from his diet and i cant get over the difference in him he is a different child. He has been on asthma pumps for his whole life and he hasnt needed his blue pump at all. Its so hard to remove sulphite from a persons diet but it can be done we have gone organic and i have been cooking everything from scratch !|
I would love to talk to anyone with this allergy to exchange ideas
Ashley Jimmys mummy
|Posted By : couchtater - 8/20/2010 4:46 PM|
|Come over to the GERD forum. One of the ladies there has a sulfite allergy. She can tell you what she eats.|
Her name's Alcie.
Problems too numerous to name. :)
|Posted By : Alcie - 8/21/2010 9:32 AM|
|The best explanation of sulfite allergies is a whole book online at http://www.learningtarget.com/nosulfites/index.htm|
I've posted how to keep a food journal and how to do challenge testing several times - on this forum and the GERD forum.
In this country there is no reliable and tested skin, blood or any other test for sulfite allergy. The best thing is to keep a journal and find out if the foods you don't tolerate ALL have sulfite in them. MSG is in many of the same foods, but not all. There are plenty of other food intolerances/sensitivities/allergies too.
There are plenty of organic foods that have natural sulfite: eggs, cheese, grapes, onions, garlic ...
Labels lie. They still don't have to put in sulfite that was added before the food was made by the selling company.
Avocados are ok. It's the preserved lime juice and other additives that make it full of sulfite.
My reaction is gastric reflux and tachycardia.
|Posted By : Ashleyboo - 8/21/2010 1:32 PM|
|Hi Alcie |
My son had a skin scratch test in london that came up pos we removed it from his diet and he is a different child. Jimmy has Asthma and Emphasema but the removal for sulphite has made such a difference. He hasnt coughed once since his new diet started. Its great to know there are others with the same allergy and thanks again for your time x
|Posted By : Alcie - 8/21/2010 7:51 PM|
|For those who have sulfite skin problems, you should know that sulfites (and sulfates) are found in detergents, soaps, shampoos, and skin products. There's a good story by "housemouse" who nearly died of severe skin allergy.|
She recently posted on her website that she's been helped by taking vitamin B complex. I take a shot once a month. I'll give the daily a try. I can't take most vitamin pills because I react to something in them.
She's got a good list of food substitutes and a list of safe soaps and detergents.
|Posted By : Rashyrashers - 8/24/2010 5:40 AM|
|Hi Alcie, thanks for your reply on the other forum. I read the book u suggested and am now really positive that sulfites allergy is my problem. I have been suffering on and off with severe facial swelling and rashes. My allergist has been looking for a pattern and so far thinks it's a preservative.. He never mentioned sulfites which is odd as I totally fit the description. I didn't realise allergies could also affect a person with fatigue and headaches etc.. I am constantly exhausted have constant unwell tummy and non stop headaches. |
I am trying s week without the major sulfite foods so I will let u all know how it goes. It really cuts out air of stuff but it's a healthy diet so won't do me any harm to try.
I hope ur all doing ok? How's ur little boy Ashley?
|Posted By : yash888 - 12/16/2010 1:48 PM|
Pls can you tell me which doctor it is that did the skin allergy testing for sulfites and if it is london, ontario, canada or london, england.
I need this test very badly. Everyone thinks I am crazy and I can't eat anything.
Would you pls be kind enough to share with us which are the 20 foods to eat safely with this sulfite allergy.
and also where to purchase them.
thanks a lot.
thanks everyone, this is a great place, I am so glad I found you, have been dealing with this sulfite issue for a while and I think that I am deteriorating slowly and these doctors, even hospital emergency doctors dont understand it and what to do.
I took your email addy out. If you want members to contact you, you can put your email in your profile. This protects you from spambots.
Post Edited By Moderator (Red_34) : 12/17/2010 4:25:58 AM (GMT-7)
|Posted By : Alcie - 12/16/2010 2:52 PM|
Don't post your email! You're asking for spam.
There still aren't any approved tests for sulfites. All you can do is "challenge testing" which I think I posted in this thread somewhere. Don't do that if your reaction is life-threatening!
By going to the link you will find that sulfite intolerance/sensitivity is not like a peanut allergy. You can tolerate SOME sulfite, but you have to figure out how much. There are loads of foods with limited amounts of sulfite that you can eat, just not in large quantities. The calculations and explanation of how to figure out your personal tolerance is on the website.
My personal tolerance is probably about 2000 micrograms a day.
Most fruits and vegetables and meats are just fine - as long as they are not processed. Just stay away from garlic and onions and pork. It's the processing that introduces the contaminant. Do your own cooking!
If you must eat out don't eat french fries, bread, or anything with onions or garlic or pepper. Avoid soups, gravy, sauces, gelatin, sodas - well, read the lists and do the calculations for the quantity of the food you are considering eating.
Medications on lists MAY have sulfite, but are often available without it. You have to look up each one and ask, and that doesn't always give you the right answer. For instance, I had to have a "barium swallow" to check my stomach by x-ray. On tasting the drink I asked it it contained sweeteners or flavoring and was told it did not. I drank it and had a reaction a couple of hours later - delayed reaction is quite usual with sulfites. I looked the product up by brand name and found it did have artificial sweetener and flavoring - both of which do contain sulfites. This is quite often the case with liquid medicines and liqui-gels. I can have local anesthetics which are on lists, but are AVAILABLE without sulfite preservative. I do not tolerate vaccinations with products containing gelatin.
Gelatin is made from sulfited pork skin. A nice little dish gives me tachycardia within a half hour.
Most sensitive people have migraines as a reaction to sulfites.
ER can't do anything for sulfite intolerance, except for reprogramming your heart, which I had to have done, if you have tachycardia that just won't stop by itself. I've tried Benadryl and Alavert to no avail. It's just not an IgE mediated allergy.
|Posted By : yash888 - 12/16/2010 4:00 PM|
thanks for your info, I am just going nuts.
I spoke to my boss today because I have been experiencing too much fatigue from too much work and then I need to go home to cook from scratch and have no energy, there is nothing out there that I can eat and not get a reaction. There is no way out and all the tests are negative and all the running around for them creates more stress and anxiety and no one understands.
I had to go to the doctors this morning and he told me that I need time to go and do all these tests and try to get the help I need to figure this out. He told me he was sending me to 'counselling' at the hospital and when I called the number, the lady told me that this was 'physiciatry'??? Everyone seems to think we are nuts!
I needed to know from the lady Ashleyboo who said that there was a skin test for sulfites, her 2 year old son got in in London, but where London, Ontario in Canada or London, England. I hope she replies me.
I can eat sometimes eggs but one yolk and a certain bread, no fruit as I tried the bananas and it does not agree with me.
Can you pls tell me what foods you are having that are 'safe' as I have a 6 items that I eat only and am so scared that if I am allergic to them, I will have nothing to eat.
|Posted By : Alcie - 12/16/2010 9:58 PM|
|Apparently your doctor doesn't believe you have a sulfite allergy|
Fruits don't have sulfites, so maybe you have more allergies or intolerances. I don't get along with eggs either. One or two a week is all I tolerate.
Most commercial bread is loaded with preservatives. Even store bakeries get the dough in frozen and just bake it. It doesn't spoil in a couple of weeks, so you know it's not made from scratch - which would be fine unless you also have a wheat allergy. A lot of people do get intolerant to wheat as they get older. I try to keep my intake low.
Seriously, there is no sulfite in most foods! It's mainly just the processing. I did forget to add grapes and grape juice to the list of naturally sulfited foods, but bananas do not have it. There has to be more than 6 foods you can eat if your problem is sulfites.
You could be adding sulfites yourself. Pepper, garlic and onion are to be avoided. Also lemon juice in the squeeze bottles unless it's the frozen stuff. Corn starch is one that is explained in the nosulfites webpages. Mixed spices usually contain pepper and onion and garlic. Cook with just a bit of salt and maybe a single spice at a time - like basil or oregano.
Have you seen an allergist? You do need to get some skin tests to see if you have allergies that show up in the regular way, but that should only take a couple of hours.
My allergist had me keep a food journal: the date, time, what I ate and drank and the reactions an hour and two hours after eating. Then after I had a list of foods I had to break them down into single food items and do "challenge testing." I cooked egg whites separately from the yolks, ate a teaspoonful. waited 20 minutes, then ate two tsp, waited another 20 min, then ate 4, then 8 then 16. You stop at 16.
I had a pretty bad reaction to gelatin, even plain unflavored. I could eat a waffle but not the syrup. The hamburger but not the condiments. I reacted strongly to wine and beer but not apple juice.
After getting my list in order I googled my individual foods and the words "food allergies." My list happened to be the same as the list for sulfites. When I found the nosulfites website (see my previous post) I was able to start figuring out how much of a food on the lists I can tolerate. If I keep my sulfite intake to a minimum I can have a piece of pizza every couple of weeks if I want it.
But if you only tolerate 6 foods you may not even have a sulfite sensitivity. What are your reactions and to what foods?
|Posted By : yash888 - 12/19/2010 4:44 PM|
I cannot eat any processed or take out food or food in a restaurant. I was sitting with my sister and nephew two years ago at Christmas time at Swiss Chalet and having chicken breast, fries and gravy with a salad and my face was flushed and swollen, the throat constricting and did not feel myself at all. That weird feeling of distress and doom and gastro going on and since then I seriously started to go to the doctor and allergist. I stopped eating out, period.
It came to a point where I thought I was 'allergic' to all food because whatever I ate, I would get the symptoms of sulfite. I actually self analyzed myself and the allergist here in Canada, although there is no test for sulfites confirmed it after hearing all my symptoms. She was quite helpful and told me to try to get fresh veggies from the market etc but in Canada, the organics are gone in fall and winter and its very hard for me right now.
I don't know how to live with this allergy, it is unlike other allergies. In USA, there is no sulfites in fruit, but when that same fruit is sent by truck to Canada from USA or other countries, they are sulfited or sit in a sulfite bath and then put in a refrigerated truck to head for Canada. EVEN ORGANIC FRUITS AND VEGGIES. Organic is pesticide free but not necessarily sulfite free thats what I have learnt.
Organic produce from Canada in summertime is okay for me but I still cannot have Swiss Chard and I found out it is loaded with natural sulfites, ofcourse, its full of iron, FeS04. But so is spinach but I was okay eating the local organic spinach and eggplant, zuccini and cucumbers, sweet peppers and turnips and sweet potato, oh dear, I miss those so much! In winter here, day to day is hard for me to repeat the same food, and to be honest I am really scared to trying to eat anything else until I have answers.
This forum is the greatest, I learnt so much and you are wonderful and have so much knowledge, I know with friends like you, I will be okay and I want to thank you for that.
My allergist suggested I go to Cleveland hospital either in Ohio or Florida where they have a special clinic for Sulfites and I can get help from there.
I have spoken to my boss on 16th dec to ask him for a medical leave for about a month so that I can fly down to the clinic and get some answers and maybe some education on this as none of the doctors here in Canada including the hospital emergency doctors know anything about sulfite allergy and that it is also in epipens.
I also get chest pains and whenever ended up at the hosp. they did all the heart tests with always the same results, nothing wrong with the heart!! Then how is it it feels like I am going to die.
I was reading that tachycardia is also due to the sulfite reaction, I am thinking it may be that and not anything to do with heart attack or so.
Sometimes when I am driving home in the bumper to bumper cars where I am stuck for a long time till I reach home, the exhaust fumes from the car ahead of me (sulfur dioxide fumes) affect me and my left arm will go heavy and numb and I feel like I am going to pass out and the feeling of doom and anxiety and then chills around my chest sometimes. I am scared to take benadryl in case it is my heart and not a reaction but it has happened to me three times now over the 5 months and I am putting all this together to be sulfite allergy. This also happens at gas stations if I spend too much time waiting to fill gas.
When I have this reaction, I will be just sitting in one place and not wanting to move, its like I am in a trance and the different reactions take place.
There is so much more, my life is upside down as I work 8 and a half hours but wake up at 6am and come home at 6pm thats 12 hours and after that have to cook my food and attend to my yorkie and take her for walks on nice days. I am exhausted and if I get a reaction from something that did not agree with me, I still have to go to work the next day, regardless.
I also have a rotator cuff injury from my work some years ago and am dealing with a bad right shoulder (partially disabled) so things are hard enough for me to do so much work at work and then come home and do more work and then do all the cleaning of the mess.
sorry, I am just venting here, but this all adds up and I am just wanting some answers and solutions so that I can have a healthy life like everyone else.
thanks for listening to me and trying to help me. Do you think that if I call the Cleveland clinic and speak to a specialist to see if they can help me and take it from there or should I just pursue with endless tests which they are doing here but always same answer, 'nothing' is found and they don't know.
Alison never answered and I never got to know what other foods I can safely eat.
|Posted By : yash888 - 12/19/2010 4:48 PM|
also the gastric reflux problem that is just in the throat as well and my doctor prescribed Nexium but I did not take it.
I just drink a quarter glass of milk and sit upright and sleep upright, very hard to fall asleep too because of the feeling in the throat.
|Posted By : yash888 - 12/19/2010 6:23 PM|
| My reaction is gastric reflux and chest pain as well - is this called tachycardia? my heart beats fast and I can hear the heartbeat in my ear. My neck and jaw kind of seize.
how is everyone else doing? hope we can create some recipes between us and share them, that would be wonderful, what do you think?
|Posted By : Alcie - 12/20/2010 10:05 AM|
Do try the Nexium for the reflux. It might help calm down the hearttoo.
Yes, rapid heart beating is called tachycardia. Hearing heartbeats is something you should discuss with a cardiologist because it can be something wrong with an artery in the neck. But don't get hysterical. Usually it's nothing.
If your heart is beating 120 beats a minute or more for a long time and you can't get it to slow down with valsalva maneuver or coughing - see posts above (I think) - you have to go to the ER to get a shot to reset the heart.
Go to the GERD pages for loads of info on that subject.
No need for recipes, just cook your food yourself without pepper, garlic or onion. You should be able to tolerate most fruits (except grapes) and veggies, meats except pork.
|Posted By : yash888 - 12/20/2010 11:01 AM|
yes, I was always using black pepper and red chili flakes and kosher salt in almost everything, eggs, chicken, potatoes and sometimes a little organic thyme. But I also use organic garlic on my chicken, sometimes I don't feel well afterwards, but sometimes I am okay with eating it.
At lunch, everyday without fail, I take an extra strength reactine and the calcium vitamin but I don't take any other vitamin. Should I be taking a multivitamin ?? My allergist had said I should be but I got a reaction once and did not try any other brand after that.
I read that the liver produces this enzyme that converts the sulpites to a stable sulfates in our body and we lack this enzyme and therefore the allergy.
I read lots of people are taking this molybdenum and quertecin and bromelain, any idea about this, do I have to see a herbalist or something or can the Medical Clinic help me with this.
The more I know the more I can control my reactions and try to have a decent life.
Since you gave me the websites to visit, I have and am following your advise and its true, this weekend I did not have any reactions and actually had the energy to clean the house, hooray!
thank you very much, pls keep writing, you have so much knowledge and it can touch and save many lives.
|Posted By : Alcie - 12/20/2010 8:53 PM|
|Salt doesn't have sulfite, but black peppercorns are roasted in 3rd world countries over charcoal and the pepper picks up sulfite from it.
Fresh potatoes are fine, but never use frozen or dried. Those are all sulfited. I avoid french fries except as fairs where they are cutting up fresh potatoes.
Some vitamins, especially biotin, contain sulfite. A normal one once a day should be OK, but if youhave a reaction, try a different one. I have less trouble with the real tiny round ones.
I doubt a herbalist would have any true experience with sulfite. You'd be safer with an allergist - someone who has at least had to study biochemistry.
Try using individual spices, not mixed ones. Just plain dried oregano, basil, or some nice fresh ones are the safest. You will be surprised that you need very little salt too.
Bread is one of our worst enemies. It's amazing how many things are now put in it.
Any time you see the words carmel coloring, corn starch, corn syrup, yellow dye #5, and much more, keep your intake to a minimum to avoid sulfites. If I keep my consumption under control I can eat a little cheese or chocolate, which have a fair amount of sulfite. One thing I don't tolerate well at all is gelatin.
|Posted By : yash888 - 12/21/2010 9:53 AM|
thank you for all this info.
Yes, I cut out black pepper I use to add it to everything I ate, wow.
I need to grow an organic spice pot in my kitchen for the winter months for the herbs.
Are you in Canada because I feel you are someone I know.
Is your daughter working at Bennett & Jones downtown Toronto?
If it is you, you must remember talking with me on the phone, I found you through my sister Rose who also worked at this Law firm with your daughter, pls pls let me know if that is you.
|Posted By : DEJ - 12/21/2010 9:47 PM|
|New member here. |
I am sulfite sensitive - learned that a few years ago. I was unable to get a confirmed diagnosis by a doctor (my allergist agreed that was probably the issue, but said "We don't do anything for that - just avoid the foods that bother you.")
When I figured this out, I immediately suspected my son was also sensitive (he's 4 now). He was colicky as a baby and had odd illnesses with high fevers and vomiting that would come and go within a day or two. Since we have been limiting his sulfite intake he doesn't seem to get sick at all - except when he eats or drinks something with a fair amount of sulfites (a rare occasion now, but we screw up once in a while - or a family member who doesn't believe us lets him have something he should stay away from!)
I have come to realize that I grew up with this problem and had the same illnesses my son was having! A big difference with me is that I was diagnosed with Rheumatoid Arthritis and that was used as an explanation of the fevers. For the headaches, everyone said I was just stressed all the time. Now I suspect all or most of my trouble was caused by sulfites! (for the Arthritis, I used to have joint pain a LOT, but since watching my sulfites I've had no trouble with that either)
Every once in a while I learn something new still... recent findings are chocolate with chocolate liquor in it provokes a strong headache reaction and a certain brand of roast beef my wife was buying actually contains carmel coloring! Nothing is sacred these days...
A comment on something I read here about breads - I've had really good luck with natural breads and even some really cheap breads (mostly air!) with no coloring or preservatives (just chemical leavening).
That's enough of an intro for me.. there's so much to the story, but it would make for a book of its own... back to work now. Glad to have found this forum!
|Posted By : Alcie - 12/22/2010 9:22 AM|
No, I don't live in Canada, although half my family is from there and I have relatives still there. I'm near Pittsburgh. I have no daughters, just sons and now daughters-in-law. There's more than one way to get daughters. :)
You were lucky to have found docs who at least have heard of sulfite allergy. Most don't believe in it.
Yes, there is no treatment. Baby formulas have dextrose, which is sulfited. That may have been why I was a "spitter" as a baby. Baby foods contain a lot of additives too. Make your own!
The usual reaction to sulfites is migraines. See what Rick Williams has to say on his web pages at http://www.learningtarget.com/nosulfites/index.htm
You can read the entire book, minus the tables of how much sulfite is in many, many foods and medicines, for free.
I did buy his book because I needed to know more about how much sulfite is in various foods and medicines. That helped me figure out I can eat a lot of foods that are on "sulfited" lists, but I can only eat a little of them. It's not like peanut allergy where a tiny touch sends you into a reaction. I can actualy have a can of soda if I don't have other sulfites that day. I calculated that I could have 1 bag of D5-saline when I was in the hospital. 5% dextrose if it was running full blast would have made me ill, but 1 liter a day was OK. I carry with me a list of medicines I know I don't tolerate and ones that are known to contain sulfite - in case I can't speak for myself. I've needed the lists a couple of times for emergency hospitalizations.
All the breads on the grocery store shelves are sulfited to some degree. The ones baked in grocery stores come in frozen, and are just like pizza dough, which is a known source of sulfite. I do eat some, and regret it every time.
All beef, as well as most other meats in the deli contains carmel coloring. Cook your own roast and get a slicer and you won't have any problems. But you still have to avoid ham because pork naturally contains sulfite.
|Posted By : DEJ - 12/22/2010 11:18 AM|
|I did buy the book as well. It was a sort of bible for me for a while, and I still use it as a reference on occasion. |
We have a bakery that sells to the local grocery stores and they do not use any sulfited ingredients - and the bread is amazing. Their ingredient list is 4 things: water, salt, yeast, and milled flour. Yea, some sulfites from the natural yeast activity, but much better than other breads. A side effect is this company's bread goes bad VERY quickly.
In any case I do somewhat limit bread intake even of the ones I don't normally have issues with because - like you said - they absolutely do contain sulfites. For some things we simply select the kind or brand we estimate to have the least sulfites and eat sparingly.
The most difficult thing about this problem is the 'analog' nature of it - like you said, eating some foods that are sulfited is not necessarily a problem, but when the total intake of sulfites in a given period of time exceeds our tolerance level, bad things start to happen.
Oh with the doctor.. my disappointment was that he wasn't willing to even have it listed in my medical records at all! Not a huge issue for me, but with my son - daycare and schools won't alter what they give him if there is no documented issue! And daycare doesn't allow the kids to bring their own food.. neither does his pre-k program! Essentially, without the doctor note we're at the mercy of what the schools are feeding him! and it does cause issues!
- sorry, short rant -
|Posted By : DEJ - 12/22/2010 11:23 AM|
|Last thought about the doctor thing... it seems that it is important to have it listed/documented/something because of the amount of medications that contain sulfites! Thoughts?|
For now, I don't bother with doctors since I'm healthier now than I've ever been.
|Posted By : Alcie - 12/23/2010 8:52 PM|
|Maybe your doc just doesn't want to call sulfite sensitivity an allergy. It doesn't make any difference what term is used. My allergist is a lumper, calls sensitivities and intolerances allergies. If your doc won't consider sulfite intolerance/allergy is a condition no matter what it's called, find another doc who will. I recommend an allergist.|
Can you educate the kid about not eating certain foods? You should be able to get the menu for the week or month. It won't hurt if he eats some sulfite at school or daycare as long as you can keep the total for the day under control. My DIL was able to get her preschooler to prefer regular milk instead of chocolate milk and to prefer packed lunch most days, after he tasted the school food. It helps to talk about taste instead of trying to get a 4-year-old to comprehend chemistry.
Schools aren't likely to comprehend sulfites (and other additives) in processed food, and they buy the cheapest food available. They don't actually cook in their kitchens anymore, just heat up portion-control servings of processed food. Most districts still have pop and candy machines. If we have trouble educating our doctors, how in the world can we possibly expect to educate school "nutritionists?"
|Posted By : Confused_Aussie - 12/28/2010 8:57 PM|
|So, after having a read through these posts I am becoming more confused about my diagonsis. Three years ago I started displaying anaphylaxis symptoms when out at dinner eating thai with a glass of wine, I then was fine for a few weeks before I was having a glass of wine and started to feel 'funny' again, so I stopped drinking, but continued to eat guacomole... (which I later looked had prawns and sulphites) not surprisingly my lips started swelling and breathing became more shallow - thank goodness for anti-histamines. |
I went to the dr who gave me a blood test - I came out positive to seafood and nuts IGE allergy. I was sent to the allergist, where after skin tests diagonsed me with a sulphite allergy.
I have been 'off' them for three years now. I have had a vitamin test in that time and not suprisingly was low in vitamin B, so it all seems linked.
But, I think I have had a reaction to paracetamol - gelatin coating a few years ago. However, I can eat pork, pepper, red onions, mushrooms, some spices, white bread - it has vinegar on the label but no sulphites, ham (without sulphites, including no tapioca startch etc)... I am confused, I think I can recall having capsules, which I've later learnt have sulphites. I am wondering if I do actually have this 'allergy' after all... I've reacted to strawberries, but have no problems with apples, bananas, etc... I also get hives with particular shampoos and detergents. I can have citric acid in foods and have particular chips and have recently discovered I can have salt and 'vinegar' flavoured chips - no obvious sulphites in the label.
Surely, if I can tolerate capsules then the paracetamol may have been something else? If I can tolerate pork and pepper no problems and 'pure' soy sauce (no caramel flavours) all in the same dish as puff pastry (which doesn't label any sulphites) on the packet then my teolerance is quite high or perhaps living in Australia means that the food standards are high on these and they don't have sulphites? I'm so confused!!!!
Anybody else have weird reactions/no reactions? Is it possible that my allergies are something else entirely or that they have gone???
|Posted By : Alcie - 12/29/2010 9:43 AM|
|The thing about sulfites is there has to be a certain quantity to trigger a reaction. A low level food, even though it "contains" sulfite is not enough. Pork is naturally sulfited, doesn't have any added, bothers me if I eat a slice of ham but not a couple of strips of bacon, but you may not have ingested enough to trigger at your level.|
You probably have more than one sensitivity/allergy. Sulfite is not an IgE mediated allergy. It also calms down when you avoid highly sulfited foods and you can become more tolerant again.
Your reaction to the prawns was probably what triggered the lips swelling and the antihistamine helping. They are IgE mediated.
Shampoos have multiple potential allergens.
Labels only tell you what has been added in large quantities. They don't have to tell you about natural sulfite - as in wine, or what someone else added to an ingredient. Gelatin is a good example. I don't know where they get the pig skin or who soaks it in the sulfite bath.
I don't know why guacamole triggers my reaction. I can eat plain avocados just fine. Same with corn starch vs plain corn, but there I know sulfite is used in the processing.
|Posted By : Razzle - 12/31/2010 6:53 PM|
|Free-flowing agents in some salt brands can be derived from corn, which is sulfited... I do best with Redman salt. Sea salt makes me ill but not sure why...|
Chronic Lyme, Bart., Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut dysmotility & non-specific inflammation, UCTD, Osteoporosis, etc.; G-Tube
Meds: Ceftin, Singulair, Claritin, Domperidone, Milk Thistle, homeopathy, probiotics, etc.
|Posted By : Pinguicula - 1/17/2011 11:21 PM|
|Wow, finally found some people with the same sulphite problems as I have.|
It has gotten quite bad in the last few years, when I exceed my threshold, I typically wake up at 1:30 am with terrible gastric distress,
followed by vomiting for 18 to 24 hours, the only thing I can do is to drink filtered water so I don't turn my guts insideout with dry heaves every 15 minutes, this is
accompanied by strange hallucinations, 2 - 3 days to get back on solid food. Tried the hospital thing, but the beds were too cold and the bedpans too small.
The doctors I have seen have been no help whatsoever, totally misdiagnosed the problem.
I also had persistent gloom and doom, panic attacks, etc. I was self medicating, fell into a depression, was put on antidepressants
and had to take a stress leave from work last year. I had 3 of the major barf attacks last Oct and Nov, twice from ice cream with
maraschinos (2 small bowls) and once from 2 beers and then I got really pissed at myself, I started scouring the web and reading the labels
on everything and realized that even though I had been aware of the sulphites for the past 18 months or so, I wasn't avoiding a lot of the hidden stuff.
Over the Christmas holidays I declined all of the group and department dinners out (took a look at The Keg allergy guide), refused all sweets (the real eye-opener came when I read the ingredients of a pre-made cake and identified 4 different added sulphites, I knew I was on the right track!)
I didn't eat anything that I didn't cook and just stayed away from alcohol altogether.
In the last 2 weeks it has been like the lights have come on, I have lost 15 pounds, my joint pains are gone no more gloom and doom, I am actually cheerful all day, I haven't felt this good for 25 years!
A friend gave us a breadmaker and an ice cream maker a few months ago, very handy now.
I am lucky that I can cook and have been able to prepare a pretty tasty and varied diet, it does take some work, but has been worth the effort.
|Posted By : Alcie - 1/18/2011 7:19 PM|
You are smart to be researching your problems. I posted a link above somewhere. On that website are directions for calculating how much sulfite you are ingesting in various foods. If you had done that with the maraschino cherries you would have stopped at 1 or 2 and not gotten so sick.
Before the next time you get to vomiting get a small bottle of paregoric. Ask your doc for a prescription. If you can get down even a teaspoonful it will instantly stop the heaves. You won't have to worry about getting addicted. It tastes truly awful. When you get yourself dehydrated from vomiting try a little flat ginger ale. Yes it has a little sulfite, but if you can stay below your limit it helps a lot. I much prefer Vernor's because it's sweeter and works much better in my experience as a patient and mom of 4, grandmom to 3. It has real ginger.
I think I also posted on this thread how to keep a food journal and how to do food challenge testing.
|Posted By : sulfitegal - 2/24/2011 4:17 PM|
I am trying to compile a definitive list of what foods sulfites are or may be in. This is what I have so far. Are there things I should add or take off the list? I have known about my sulfite allergy for 3 years. It is the type in which an immediate severe reaction occurs to eating minute amounts of sulfites. I do already have Rick's book and it has been very helpful. I believe the internet (and God's help) allowed me to self-diagnose this problem and kept me alive. I do have a reaction to organic corn starch, so it must also contain sulfites. Thanks for your help.
Sulfite Allergy List
sodium dithionite (may yield residual sulfites, in pickled foods)
methionine (produces sulfite in the body)
Vitamin B7 (Biotin)
Grape Juice, grape juice concentrate (organic grapes OK)
Raisins, raisin paste (organic raisins OK)
Dehydrated potato / potato flakes
Corn starch / food starch / modified food starch
Powdered Sugar / Confectioners sugar (contains starch)
Corn syrup (corn syrup solids)
Glucose (glucose syrup, confectionary icing)
Artificial Sweeteners (acesulfame K, saccharin contains dextrose and maltodextrin)
The following are assumed to contain sulfites unless proven otherwise:
Molasses (unless says unsulfured)
Lemon Juice Concentrate (organic lemon juice concentrate OK)
Lime Juice Concentrate
Shredded cheese (starch)
Maraschino Cherries/ Glacee / glazed fruit
Dried Coconut (unless states unsulfured)
Dried fruit: apricots, papaya, peaches, pears, pineapple, apples (unless unsulfured)
Shrimp (fresh, frozen, canned, dried)
Frozen loster / prawns
Pickled vegetables (onions, cabbage, peppers)
French fries, hash browns, all frozen potato products (frozen)
(fresh may be treated with sulfites, also?)
Dried vegetables (soup mix)
Pickles / Relish
Table Salt (regular table salt contains dextrose) ( sea salt OK)
Tea??? (instant tea, liquid tea concentrate)
|Posted By : Alcie - 2/24/2011 9:42 PM|
|For others reading this thread -
The problem with sulfite is that it's not a true (IgE mediated) allergy for most people, although there are some who DO react to it with anaphalaxis. Usually it's termed an intolerance or sensitivity. Most of us just get worse symptoms as the amount of sulfite intake increases. That's why you can't just rely on a list of foods and medicines, but you have to learn your tolerance level and how much you take in with the various foods.
Sulfite gal - Can you tolerate any at all?
Rick wrote at length on the process of making corn starch. Yes, it's sulfited. I could look it up in the book to find out how much is in it, but I know it's a lot because I react to it strongly too. I can't eat gravy made with it, although I can take pills where it's used as a binder. Sulfite is often used to keep nozzels from clogging in the spray drying process of making lots of powdered foods, even if it's not added to the food for preservaitve reasons.
Another big problem for me is gelatin. Gelatin plus sulfite preservative is found in lots of immunizations, which is why I react to many of them: flu shots, pneumonia vaccine, MMR. I did get away with taking Benadryl for 2-3 days when I was forced to take the pneumonia vaccine, but it wasn't fun. I can't eat even a small serving of gelatin without getting tachycardia. The amount in capsule coatings is OK though.
Tapioca is supposed to be OK, but you may be right. I react to it a little.
Frozen lemon juice is clean.
Most tea is clean unless labeled, and some brands are preserved!
Coconut milk? Dried coconut is sulfited.
Yellow dye #5, also other azo dyes.
Shrimp can be cleaned enough for me if washed thoroughly, since it's only sprayed on.
Fresh potatoes are clean. Canned may be sulfited.
All artificial sweeteners have dextrose or maltodexrin, or the other products for diets.
Grapes and grape juice and wine are naturally sulfited.
Pork is naturally sulfited.
All cheese is supposed to contain sulfite from the action of the bacteria that makes it.
Onions and garlic.
|Posted By : Razzle - 2/25/2011 9:03 AM|
All corn derivatives are sulfited, as are all coconut derivatives. Many other things contain sulfites as well - sorbates, polysorbates, etc., and many medications. Air pollution also contains sulfites - sulfur dioxide.
Email me snoodledoo (at) yahoo (dot) com for a list (5 pages) of sulfited ingredients.
Chronic Lyme, Bart., Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut dysmotility & non-specific inflammation, UCTD, Osteoporosis, etc.; G-Tube
Meds: Claritin, Domperidone, nutritional supplements, homeopathy, probiotics, etc.
|Posted By : Smudger - 3/15/2011 6:48 AM|
I have recently been diagnosed with a sulphite intolerance and wondered if anyone had some good recipes. I have been very strict with my self, but think I must have had some sulphites accidently, and had a bad asthma attack, can any one help.
|Posted By : Alcie - 3/16/2011 3:58 PM|
|Hi Smudger -|
From your spelling I presume you are not in USA. Nice to hear from you! So sorry you have an asthma reaction to sulfites (the way we spell it).
It's easy to get something where the sulfite is not listed or the people making it don't list all the ingredients. Unfortunately there's not much you can do once the reaction starts - unless an antihistamine, like diphenhydramine, helps you.
I just avoid most restaurant food and packaged meals. Really, you can cook things you tolerate the way anyone else does. Just watch how you season it - no mixed spices, just individual spices without onion or garlic and only the tiniest bit of pepper. Salt is fine for me. Avoid thickeners, especially corn starch, although flour is usually ok.
There are tons of lists of sulfite containing foods, but most of the foods only have a tiny amount and you can still eat them in moderation unless you are super-sensitive.
I posted a good website which has amounts of sulfite in foods listed. http://www.learningtarget.com/nosulfites/index.htm
|Posted By : Sulfite - 3/26/2011 2:18 AM|
|A SULFITE PROBLEM
I have a sulfite intolerance. Sulfite intolerance is cumulative (gets worse each time you are exposed) and if I had realised 10 years ago my health would be much better.
I have controlled my intolerance by not taking in any foods with sulpher in them and by drinking distilled water.
I eat only food I cook at home and buy only products with "no preservative added" at the supermarket...eg bread, etc. The only food I can eat in resturants is authentic Japanese, as they use NO SULITES in their food at all and they use rice wine vinegar which is sulfite free. ( common vinegar is very high in sulfites.)
I have controlled all my symptoms by doing this, but unrelated to my intolerance after a CT scan I have developed acute Thyrotoxicis wich gave me atrial fib etc. The joke on me is that the ONLY treatment for this stage of my thyroid disorder is a sulfite drug.
The first day I took the drug I had chest pains, tachycardia and collapse and had the dose reduced by 1/3. And now one week in I have blisters and weeping sores on my hands and face and can hardly see out of swollen eyes. If I do not take the drug I will die and if I do take it..........probably will just be a slower process
SULFITE is a metabolic poison, it shuts down many of the biochemical pathways we need for metabolism. (it shuts down the thyroid gland also that is why I have to have it)
Overweigt people are not fat because of their fat intake, it is because Sulfite inhibits the metabolism of fat as an energy source and so it is just deposited in the body. Same for sugar, hence diabeties.
Sulfite also decreases the immune system leaving us open to cancers.
The medical profession is unaware of this sulfite problem and it is affecting more and more people daily because it is being added to our processed foods as a preservative. There is no money given to researching a problem that does not result in a drug to be sold.
Good luck if you live in the USA because corn syrup (a cheap form of sugar) has VERY HIGH levels in it.
|Posted By : Razzle - 3/28/2011 3:35 PM|
Vitamin B12 may counter some of the effects of the sulfites in the medication you rely on. I've found that taking a large dose of Vitamin B12 (1000-5000mcg) along with an antihistamine (such as Benadryl, Claritin or Zyrtec) can actually stop the sulfite reaction in its tracks. The B12 binds the sulfites and renders them unable to exert their damage in those who are allergic/sensitive. Also, the pathway that processes sulfites also processes histamines, so by taking the antihistamine, it helps to reduce the load on the enzyme pathway so it has more capacity to process the sulfites (ie, turn sulfite into the less harmful sulfate form).
Chronic Lyme, Bart., Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut dysmotility & non-specific inflammation, UCTD/Lupus, Osteoporosis, etc.; G-Tube
Meds: LDN, Claritin, Singulair, Domperidone, nutritional supplements, homeopathy, probiotics, etc.
|Posted By : nrp2b - 4/1/2011 11:24 AM|
|Hi! I'm new to this thread and feel like I have just found my "people"! This past October I self-diagnosed myself with a sulfite allergy after years of feeling horrible! It was like a light bulb went off in my head, of course it wasn't a curable diagnosis which is the frustrating part. My family and friends keep asking when I'm going to "get better"! My husband is sure the somewhere out there is a doctor who can cure me! I know that sulfite-free eating is a way of life for me. |
I have also been diagnosed with Hashimotos thyroiditis, does anyone else know a link between autoimmune diseases and sulfite sensitivity? I have been to 2 allergists who give me an epi-pen and tell me to avoid the foods making me sick!
Because of this thread I started looking at the vit D capsules and herb capsules I had been taking recently, I was feeling very foggy and tired and couldn't figure out what was wrong with me until someone mentioned gelatin! AHA! I was trying to be better about taking my vitamins and herbs only to discover they were gelatin capsules!
I have also started taking the B12! Thank you! that has helped too!
I have suffered for years from IBS, migraines, and stomach discomfort. I thought it was MSG /Soy at first and avoided all of those foods, in August I had a salad with a large amount of balsamic vinegar and started getting a migraine, then my throat/mouth starting swelling up more than it used to with "msg/soy"! Luckily I'm an RN in a hospital and was working when it happened so I was able to get an IV benadryl rather quickly! It still took me until October when I realized what was wrong with me, after I had to spend 24 hours in the hospital again for severe stomach pain! CT scan showed inflammation. Little did I know that the morphine sulphate they gave me for pain and the drink they gave me for the CT where contributing to my symptoms! My face was so puffy it was almost unrecognizable!
So now I feel like I have found people who understand me and don't think I'm a hypochondriac!
Does anyone know of a cookbook for sulfite allergies?
|Posted By : Alcie - 4/3/2011 5:37 PM|
Do you have actual allergy symptoms - hives, swelling throat, etc? Or do you have the typical intolerance/sensitivity reactions - gastric reflux, migraine, tachycardia, lower gut problems? The latter is my type of reaction, although others have true allergy. If you are getting swelling it sounds like you may have the true allergy. :( Maybe your allergist can invent a skin test with a miniscule amount of sulfite. There aren't any approved ones on the market.
If you read a bunch of the threads - see the search box above - you will find lists of websites, how to keep a food journal, etc.
Watch that IV Benadryl! You have to ask for non-sulfited! Don't take the liquid at home either. It's sulfited too.
But there isn't enough gelatin in a simple capsule to harm you. Gel-caps, containing gelatin for filler inside them do have enough sulfite to bother me.
A lot of people who have sulfite intolerance seem to have auto-immune diseases. But then auto-immune and fibromyalgia is common too. I don't know of a really good study showing any real connection.
The epi-pen probably won't help unless you have an actual true allergy. It's got sulfite preservative in it too, so you need to get to a hospital if you use it. They don't keep well, have expiration date, so I am not refilling my Rx.
I take vitamin D, don't have any problem with them. I do have problems with Advil Liqui Gels, Tylenol Gel Caps, all liquid stomach preparations.
Foods with MSG seem to be on the lists of foods with sulfite. Processed soy generally has sulfite also.
|Posted By : jnascime - 5/3/2011 12:25 PM|
I posted this on another topic, but I just found this one and I think it might be more appropriate/beneficial for people dealing with this:
I've seen some of your other posts and just wanted to ask you some questions if you don't mind. It seems like you have a wealth of knowledge on sulfite allergies. I have not confirmed a sulfite intolerance, however I used to be on Bactrim for about 2 years, and then all of a sudden I had a terrible hives breakout. Ever since then I have been free of hives, but have had an all over body itch for the past 7 months. Antihistamines don't help, even prednisone didn't really help. Thankfully I don't have the hives that often accompany the itch, but still, being constantly itchy is brutal. In any case, I haven't taken Bactrim since that hives breakout 7 months ago as I read that after taking sulfa based drugs for some time you can develop an allergy to it. Well now I'm considering the possibility of a sulfite sensitivity. I have had worse headaches over the past 7 months, however they aren't frequent enough for me to make any connection to the food I'm eating. I know that what I eat nothing by rice and chicken, I itch significantly less than when I eat without paying attention. I haven't eaten sulfite free long enough to know if my itch will go completely away. I was wondering if with your expertise on the subject, do you think I could have this allergy based on my symptom (mostly itching). Additionally, i know the only way to know for sure is to avoid sulfites for a while, and I want to do this, but everytime I try, i fail because I"m at a loss for what to eat.
If you could provide the names of the products you buy that you know don't have sulfites and where you got them that would be great. I'm a big sweets eater, and a big soda drinker... if there are sweets or sodas without sulfites I"d love to hear about it. Additionally, bread, and I know cheese has a lot, but if there is any cheese that you can tolerate please let me know. Thank you for your guidance, I look forward to hearing back from you! I hope i can find the cause of this relentless itch. I have tried gluten free to no avail. I have also been tested for most foods and outside allergies, and I have none. I have even attempted the candida diet, and that didn't help at all either. As a result of this itch without a cause I have had severe anxiety (which i know can be caused by a sulfite allergy too) and have since been on prozac. It doesn't cure the issue, but it certainly helps make life more livable. It seems so silly to be this down about an itch. I have no rash, or markings on my body... i just simply have an irritating, daily prickly itch that I didn't have prior to my hives breakout 7 months ago. Thanks again!
|Posted By : Alcie - 5/3/2011 6:01 PM|
|Hi Jennifer -
I know a bit about sulfite "sensitivity/intolerance" but not as much as some others about sulfite "allergy." You can get a lot of information by reading the old threads, which you can access by typing in your keywords in the search box just under the "join healingwell" box at the top, right of the page.
Allergy to Bactrim does not necessarily mean you are allergic or sensitive to sulfites, but if you have sulfite allergy or sensitivity symptoms, it might be useful to do a bunch of research on yourself to find out. IF YOU HAVE LIFE-THREATENING REACTIONS PLEASE CONSULT YOUR ALERGIST BEFORE DOING ANY SELF TESTING!
Migraines, stomach refluxing and rapid heartbeat are symptoms I know a little about
. I get the last two, which for me come on within a half hour to two hours of eating over a total for the day of 2000 to 3000 micrograms of sulfite. That's not horribly sensitive, but I used to be worse. Migraine sufferers can react up to two days after consuming their trigger dosage. There's a whole book on this, with how to calculate, free at http://www.learningtarget.com/nosulfites/index.htm
The lists of sulfite-containing foods on most websites is not too helpful because you have to know which foods have a LOT of sulfite, not the ones that just have a little.
Eating rice and chicken may not help if you are flavoring them with onions or pepper. Sodas are out permanently and didn't give you any nutrition anyway. If you need fizz try mineral water. Sugar is OK if it's cane, bread is out if it came from a store, although some independent bakeries bake clean - no dough "conditioners" or corn syrup. Check out my posts about keeping a "food log" aka "food journal" higher in this thread or in others in the search box. It takes a couple of months to figure out a list of food intolerances!
You really ought to see an allergist and get skin testing done to see if you have allergies that can be detected by the normal methods. Blood testing isn't very reliable.
|Posted By : gapey - 6/6/2011 10:12 PM|
|Hello just came across this thread in a Google search for "sulfite allergy Seattle" I was hoping to find a doc that specialized in that or knew more about it than my current allergist.|
I just recently discovered I am allergic to sulfites at least that is my assumption both red and more so white wine cause me to get bad eczema on my right cheek which started over a year and a half ago when I came into contact with epoxy resin on that side of my face. Crazy how something like that could turn into what it has become now. I never thought sulfites could be in other non-food items. Thanks to Alcie for mentioning that. I looked at my products and a few of them have sulfates in them, specifically the SPF30 lotion I have which I used over the weekend. That explains the recurrence of my eczema today since I have cut wine out of my diet for the past couple of weeks. I have heard a lot of people recommend Vitamin B complex and am considering giving that a try.
My eczema has been going on for over a year and a half and no dermatologist or allergist has been able to figure out what is causing it. I only recently discovered myself that wine seemed to be instigating it. When I brought ti up to my allergist, the only recommendation for me was to just not drink wine. Just getting so fed up with this and wish it would disappear.
|Posted By : Alcie - 6/8/2011 7:52 PM|
|SulfAtes are not a problem, They are different from sulfItes. But there are lotions and potions that have sulfites in them, and sensitivity is often acquired from exposure. (I'm going to post about my new grass allergy in a minute.)|
Do go back in this thread and read about keeping a food journal. It's the best way to figure out food sensitivities. It really helps your allergist too, when you come in with a list of foods that set you off with a reaction.
There are lots of other ingredients that can cause eczema, probably more commonly that sulfite, but the link to wine is how I first noticed that I had a sensitivity problem too. Now, if you get it with beer or gelatin, that would create a good probability.
|Posted By : gapey - 6/8/2011 8:18 PM|
|Yup I've been keeping a food journal for the past couple of weeks. I'm on an elimination diet right now for corn, rice, soy, dairy, egg, tomato, potato and yeast since I showed some sensitivity to those in a skin test and I decided to cut out coffee from my daily routine recently too. I also showed sensitivity to almost every mold and mite test too. It was surprising to them that I didn't react to hardly any pollen and trees and the only food test I didn't test positive on was wheat so at least I can eat that. Something definitely not right with my body. After my elimination diet I will probably do a good kidney/liver cleanse. It's been a few years since I've done that.|
|Posted By : Grootje - 6/11/2011 11:13 PM|
|thank you. I am a new member who just finished reading every entry. I joined because of the mystery of sulfites. I ha e had several serious episodes that I now believe were anaphylaxis, including losing consciousness and vomiting in public restaurants. At first I eliminated certain wines, garlic and felt ok but the last episode was the worst because I had nothing to drink. My husband caught me as I was sinking down. the manager treated us as drunk until the bartender told him I had nothing to drink. It was probably potatoes that had been frozen and treated with sulfites. a new allergist has prescribed an epi pen which I take everywhere with me, but she does not think my problem is sulfites because I test negative for asthma. It seems everyone who has sulfite sensitivity also has asthma. Is this your experience?|
I am doing well on a restricted regimen of no wine, cow cheese, potatoes, olives, or dried fruit. I would like to hear from others about organic wines or scotch thAt you can tolerate or multivitamins. I am intrigued with the mention of Cleveland Clinic and the idea of B12 shots. Grootje
|Posted By : Alcie - 6/12/2011 4:07 PM|
|Not nearly all people with sulfite intolerance have asthma. I dont. It's an unproven myth because there's no accepted test for sulfite intolerance. Asthma may be common, probably more common with people who have sulfite allergy.|
Even your epi pen has sulfite, but hopefully not in a dose that would give you a big problem. With sulfites, it's how much you tolerate, not whether it's there. This is not like a peanut allergy! Even so, there's enough sulfite in all grape wines to bother me. It's in the grapes.
I get quite ill if I eat pork or gelatin. Brown sugar is a bad one for me too. I love sweet rolls, but the carmel topping is one of my triggers. Maple syrup and a lot of breads made with "dough conditioners" and preservatives, which are becomming all to common are on my strictly avoid list.
I get B-12 shots, but they don't seem to make any difference at all.
If you keep a food journal and avoid foods you know have a lot of sulfite you may keep your episodes to a minimum. One person on the forum figured out her problem wasn't sulfite but histamine releasers. So read about that and see if all your trigger foods fall into one category. MSG is in nearly all the sulfite-containing foods too. I just had a problem with a histamine-releasing anesthetic, but it was a sulfonate, so I don't know for sure what the problem was. It's going on my very long list of meds to avoid!
|Posted By : Grootje - 6/12/2011 9:54 PM|
|thank you Alcie for the reply. I have put more energy into my food diary. I had a false sense of control as I kind of slithered Into this strange world of watching every thing that I eat. The false Impression I had that wine or aged cheese was always involved and I could solve this by avoiding them was naive. Now I am remembering other occasions with slight reactions, almost just discomforts that I thought was moodiness or exhaustion. clearly I have work to do.|
|Posted By : kitkataz - 6/14/2011 12:10 AM|
|Hi everyone. I have only discovered my sulfite sensitivity in the last 6 months. My reaction was a racing heart for several days with high amounts of sulfites (sulfured molasses in homemade bread) and extreme itching and itchy rashes with low amounts (almost all food, but the apple cider vinegar I was eating on salad daily is what finally clued me into the sulfite connection). |
Jennifer, I just wanted to tell you that I get the brutality of the itch. It was a total nightmare. Mine started after a h1n1 vaccination and lasted over a year. Dreadful.... I also had itchy red, weepy rashes that were biopsied and diagnosed as psoriasis, but they cleared right up (along with the itch) when I limited the sulfites.
And I feel for you with the soda and sweets thing. I have found a soda that I can tolerate, although I agree with Alcie they provide no nutritional value, I just really want a cola sometimes... and the Whole Foods 365 brand uses cane sugar and cane for their coloring as well (stay away from most caramel coloring!!) I would consider myself a medium tolerance level. So the soda might not work for everyone....
I have found a wealth of info and super helpful sulfite sensitive people - its a yahoo group, easy enough to find, I just stumbled upon it in my google searches. The members have been there and are super helpful, along with lots of archives of old posts.
|Posted By : gapey - 6/14/2011 12:21 AM|
|Cane Sugar? I didn't realize there were sulfites in that too. I usually use it in my coffee and other things. I guess I need to start watching for that too. I am pretty new to this whole sulfite sensitivity thing. I'm not liking it one bit. :( I just started today on some sublingual B12 prescribed by my environmental illness doctor I've been seeing recently. Hope that helps.|
|Posted By : kitkataz - 6/14/2011 1:12 AM|
If you were replying to me, the cane sugar is okay. The 365 brand soda is the one that I can tolerate because they do use cane. Most soda's use caramel coloring (derived from corn), or corn syrup - both highly sulfited, but the whole foods brand does not. Sorry, if I did not write that clearly.
I use C&H cane sugar in organic coffee and in fresh homemade lemonade. Thats all I drink (except the occasional 365 soda) besides water. And watch out for water, they add sulfites to it too. Argggg.
Good luck with the B12, and look into Molybdemum supplements. It helps your body process the sulfites and may be able to increase your tolerance level. I'm trying it, but it is too soon to tell for if it will help me.
PS If anyone wants more info, Rick Williams has most of his book available to read online. It has helped me a lot. http://www.readingtarget.com/nosulfites/
|Posted By : gapey - 6/14/2011 10:20 AM|
|Oh whew I use cane sugar all the time so that's a relief. I guess I misread that. There are still a few more food allergy tests I want to have done and cane sugar is one of them. I've also recently taken a break from coffee as well though I haven't been tested for that yet but am going to request that I do as I've been drinking it every day for a while. I've shown sensitivity to almost everything I've tested so far so I'm a little scared to do more cuz I'll probably be sensitive to those too.|
I also got a blood test for serum copper the other day which is related to Molybdemum. If it's high they they will probably put me on molybdenum too. Waiting for results from that.
Thanks for the link to that I will check it out.
|Posted By : Alcie - 6/14/2011 5:09 PM|
|Welcome newbies to sulfite intolerance.
Cane sugar should be no problem, but avoid bottled lemon juice, including lemonaid at restaurants. That stuff's got over 100ppm sulfite. Clean lemon juice is in the frozen juice section. Brown sugar is way worse than white, and beet sugar should be avoided if you use a lot. Artificial sweeteners are as bad or worse because they all have fillers, usually dextrose, which is sulfited.
Kat, I'm using the "post reply" instead of the quick reply to make the link clickable.
I like this book because you can learn to calculate how much sulfite is in your food. You don't have to avoid everything, just the stuff that has toxic amounts. I especially like the information on medications. Some sites list tons of meds to avoid, but some of those meds are fine because they have low amounts of sulfite.
If you react to flu shots, don't get others unless you check them out. Most have gelatin, and will have sulfite preservative if they are in multiple dose vials. I've reacted to some. I have to avoid everything with any significant amount of gelatin, including liqui-gel capsules of OTC meds.
If you get itching, you may be allergic as well as sensitive, so keep the food journal to help figure it out.
Rice vinegar is fine. I use apple cider vinegar strictly for cleaning windows.
|Posted By : Phlox - 8/4/2011 8:11 AM|
|Hi, I am new to this site and a blogging virgin so please forgive any mistakes.|
I wanted to share with everyone who has a sulphite allergy my experience and hopefully share yours too, including any help and advise we can swap.
Up until 6 months ago I had been severely ill for nearly 8 years. It was so bad that I went from being a highly paid Director of a company to not being unable to work at all. I felt like the whole of my 40's was just wasted.
Over the time I had numerous tests which in the main were negative or not thought to be clinically significant.
I was therefore diagnosed with anxiety and depression and put on the too difficult pile. I felt this was wrong and whilst I accepted my mental health was not what it should be I felt strongly it was physiologically based so went on the search for a solution myself.
Well, it turned out to be an allergy to sulphites and since removing them from my diet as much as possible I have been pretty much symptom free for the past 6 months. Yippee!!! I feel SO much better. The turn around took about a week.
reading the websites etc lots of people associate sulphite allergy with asthma but I don't and never have had asthma with my allergy. Am I the only one?
If I have sulphites I do get breathless but this seems to be caused by a build up of gas in my stomach which seems to prevent my diaphragm from working properly. Any ideas? definately not wheezy though.
My symptoms are as follows if I eat/drink sulphites
Mental confusion or aggression
Joint mobility issues - like a temporary Rheumatoid arthritis. I can barely walk and am in pain.
stuffed up nose
IBS and stomach pains
skin rash which was diagnosed as Jessners lymphocitic infiltrate but has now gone since stopping sulphites.
Also I can't digest carbs well, so have had cut these down considerably.
liver pain (which I still get regularly)
Have other people had similar non asthmatic symptoms? I am particularly interested in views on carb digestion and liver symptoms. I know you can suffer a B1 thiamine deficiency and this can be linked to digestion of carbs. I therefore take a supplement, but it doesn't seem to have helped with the carb digestion.
Two years ago I had an abnormal liver ultrasound, I had highly echogenic marks all over it. I was told it's not cancer. I had a follow up ultrasound and was told this was normal - except I have just found out it wasn't!!!
They couldn't identify it so I think they decided to ignore it.
However, they are now doing, at my request, an additional investigation as I am still getting regular discomfort and would like to know what it is. Does this mean anything to any other sulphite allergy sufferers?
Does the sulphite allergy effect your liver short term or damage it in the long term - anyone any ideas?
Initially i concentrated on what I was eating and drinking (in terms of tea) but I improved a lot when I realised that the bottled water I was drinking was very high as was my tap water. I therefore changed to a low sulphate water and my health improved even more.
When we went on holiday I found I couldn't drink the bottled water (italian) and so picked a bottle of water which didn't have any declared sulphite thinking it would be low. It wasn't and I was very sick ( literally vomiting as well) and had to come home from hols 10 days early!
I have found a site called waters of the world which has helped me in identifying sulphite levels in water.
I have stopped drinking alcohol entirely (I was only a wine drinker) but do drink a Shweppes slimline tonic a night. I went on holiday and I thought I was OK if i stuck to same brand etc-the can was identical. After I became ill I looked at the ingredients and it contained a sulphite based preservative. Schweppes have since told me they vary the recipe from country to country, so be careful.
I know do a lot more research before I go on hols and contact the hotel. When I went in June I sent my own water by Courier.
Like everyone I find my diet really restrictive and boring. has anyone come into contact with a nutritionist or medical professional who has been really helpful?
Hope you can help and I will keep in touch if I find anything that I think is useful.
Thanks for your time.
|Posted By : Alcie - 8/4/2011 8:55 AM|
|Welcome, Phlox. Glad you've found us. Just remember that we are not doctors, just patients, and have all had different experiences.
Some people have intolerance to sulfites in lotions and beauty products (again - NOT the same as sulfate). This can come out as a rash. Beware of sulfites in medicines also.
First thing you need to do is figure out your tolerance - as long as you don't have an actual allergy. The website above gives you directions on how to calculate how much sulfite is in a portion of food or drink. I have figured I tolerate about 2000 micrograms a day. When you know how much is in different foods, you can tell how much you can eat. This goes a long way to lifting the limits on your diet! I can have an occasional soda or a slice of pizza (depending on the toppings).
Digesting carbs is probably not related, although I don't digest them well either. I take a cheap generic pancrelipase capsule with each meal that has fat or white carbs - especially bread. Speaking of bread: you could also have an intolerance to wheat. I have figured out it bothers me. There's nothing preventing us from having more than one condition! I do fine with rice, oatmeal, fresh potatoes, other starches. French fries are sulfited to keep them white here.
I don't have asthma, but a lot of sulfite intolerant people do. I do get heart arrhythmia and tachycardia from consuming sulfite beyond my tolerance. Look up cardioesophageal reflex. Heart and stomach, esophagus are connected by vagus nerve. It explains a lot about IBS. I was in the ER once when I had an abscess in my colon which caused a bad tachycardia. I had the heart converted with adenosine, but I ended up in hospital 10 days on antibiotics for the infection.
Water: It shouldn't be a problem if it has sulfate, but some water could indeed have sulfite if it has a little sulfur dioxide from a coal seam or sulfur spring.
|Posted By : Phlox - 8/4/2011 2:00 PM|
|Thank you for your reply - I really appreciate it. i think you are spot on about the cardioesophageal reflux. I have no arrymthia as long as I am avoiding sulfites but if I eat something with it in I have to take Propranol to steady my heart. I also get terrible acid reflux and wind etc.|
I also take a thing a carb digestive enzyme which helps but I have found that in my case I feel best if I keep to a low carb diet.
I'll let you know what the liver consultant suggests and also I am hoping to see Professor Brostoff who is an eminent Allergy guy in London.
I will let you know what they have to say/think.
|Posted By : supermum - 8/11/2011 7:08 AM|
I am very new to all this and until yesterday thought I was going round the twist we discovered that I have a very severe allergy to Sulphites(sulphur) and just dont know where to start I see that many others are on here with the same problems. I sincerely need your help can you help me please. Where do I start and how.
|Posted By : Alcie - 8/11/2011 10:27 AM|
|Welcome supermum. I presume you are from UK, by your name and writing.
Do you have an actual allergy - throat closing, skin reactions, etc? Or do you have what they now term a "sensitivity" or an "intolerance?" Most of us are just sensitive, have reactions lik stomach refluxing or tachycardia.
I found my intolerance problem when an allergist had me keep a food diary/journal. I knew I reacted to some specific foods. Since then I have found how much sulfite I can tolerate - using the info on the website I listed. I can have an occasional slice of pizza instead of running in fear, as long as I severely limit any other source of sulfite for the week.
Nice to meet you, and happy reading!
|Posted By : supermum - 8/11/2011 8:13 PM|
|thank you so much for your reply, my name is Mel and I come from Western Australia, although born in England. I first of all have diabetes II,but have found that I suffered first from stomach refluxing and then thought it were the diabetic tablets, the doctor gave me bactrin as he thought I have some sort of bug in the throat, that made the reflux far worse than I could even imagine. Then it was a daily thing of this burning sensation in the throat and the reflux wow never in my life had I had something like this. Then after eating the stomach pains and the rushing to the loo, unbelieveable. I then started to write down what I ate and how I felt and now I have taken away things like I found potatoes, mushrooms, tomato bases products, or ready made sauces with tomato or pasta sauce, as next day could hardly walk and feeling ill. I noticed that I could hardly sit and talk to my husband the next day if he ate garlic bread etc the day before and then I started to ask the doctor he said there are no tests for sulphites. So I just need some support at the moment, now know I am not being stupid, this is for real. I throat yesterday almost closed and I panicked but realised that the fruit I had from a can must have had something in it(apple) and stopped. But what do you have if an allergy occurs, as ventolin as sulphite in it, and antihistamines have sulphite in it.|
How do you stop the allergy it scares me. So far its back to basics I believe.
|Posted By : Alcie - 8/12/2011 1:16 PM|
|Hi Mel -|
It's possible you have a true allergic reaction to something, not just an intolerance, or it could be a severe sensitivity, as that happens too.
Bactrim bothers lots of people especially if it's given in a high dose. It may be the sulfite in the drug, but it gives people without the sensitivity stomach problems too. I can take it in smaller doses.
Plain, fresh potatoes do not have sulfite. Frozen potatoes, at least in the USA, always have sulfite to keep them white. So do canned and dried potatoes. I can't figure out if there could be any sulfite getting to you from your husband's breath, although it could indeed knock you over from the smell. Canned fruit could have sulfite to keep the color, or it could be in sugars added, especially corn syrup or dextrose. I always have a problem with a whole serving of tomato sauces, but a taste is OK unless you have an anaphalactic reaction - true allergy.
Keep on writing down your foods, also drinks and medicines. Use a small notebook with dates, times, reactions especially immediate and an hour or two. Migraine sufferers can react a day after eating sulfites.
Look up the link I posted for an entire book on sulfites. It has how to calculate how much sulfite you are eating in your meals.
It will take a couple of months to get a good list of your food intolerances. After a meal in which you react you should break down the ingredients and - CAREFULLY - preferably with the direction of an allergist - eat a small portion of one ingredient at a time. Look up on the search box at the top of the page "Challenge Testing."
I can eat the meat in a hamburger, also the lettuce and tomato, but not the ketchup, onion, pickle, or mustard. Some bread gives me a reaction also, unless it is home-made. Commercial bread often contains "dough conditioners" which contain sulfite.
When you get your list together, check it against all food intolerances and allergies. You could have more than one! Sulfite is not the only allergen. MSG, saccharin, many other things can be a separate problem.
|Posted By : Grootje - 8/24/2011 12:07 PM|
|although I have been watching my food intake I tool a break from new research. the latest postings have been very helpful. about liver or abdominal pain, I have had episodes that were tested for a hernia near the navel that forms at birth. the test was negative, but I never connected it to my sulfite problems. something to think about!|
I too have bread and wheat issues, especially on the second day. Successful solutions for me include spelt products make by Eziekel bread company and rice pasta products from Joy. they taste good too. I can tolerate restaurant bread for one day only when eaten with other foods, not I isolation. I am not tempted by pizza but save up my limited carbs for pie or an occasional cracker. Lundberg rice cakes are also good, but bland.
thanks for the tip about Schweppes. since eliminating wine from my diet I rely on good scotch and gin and tonics so I will be more careful a out the tonic. Strangely enough, I have never been able to tolerate beer or olives, so maybe my system has a small amount of I tuition.
the strange thing about reviewing these events over decades is that one begins to see that they are not emotional or work avoidance episodes but genuine physiological cause and effects. I guess I am trying to say the self diagnosis becomes a very positive realization.
|Posted By : ATXfred - 9/24/2011 4:09 AM|
|Hello all! Glad to find this forum! I deduced sulfite intolerance after a sip of wine last year that made the inside of my mouth break out in hives. I took benadyl right away and told my husband to tell EMS that's what it was if I collapsed. I started research and discovered many correlation with things that already cause me hives, including shrimp and more recently fries from some restaurants. |
I've had GERD issues, too, especially after drinking Perrier, and discovered it's high in sulphites.
I'm currently traveling in India, Nepal and Bhutan and just hope to make it home to untreated water. I've been down with a head/chest cold for several days so my guide persuaded me to see a doc. My BP was 180/110 and pulse over 100. My BP is normally controlled with 20-40 mg of ace inhibitor but he added niphedipine. Afterwards it dawned on me that HBP and tachycardia are symptoms of allergic reaction and when I checked the bottled water I've been living on it's labeled to contain "sulphates". I'm now desperately trying to find more highly purified water and not sure what to do whe I reach Nepal for two days. They are notorious for bad water so the bottled water will be my only choice. Soft drinks are not an option--nor are wine/beer. I've launched an online search for info on borttled water hoping to find something that has been filtered many times/ and with reverse osmosis so I don't die before I get home!
Post Edited (ATXfred) : 9/24/2011 3:13:39 AM (GMT-6)
|Posted By : Alcie - 9/24/2011 10:01 AM|
|It sounds like you may have a true allergy to sulfites, not just the sensitivity/intolerance most of us have. I was was unaware that some brands of bottled water have sulfite. Thanks for posting because that explains why I have a reaction to mineral water, although not as bad as yours!
There is a website that has a page listing sulfite concentration in bottled water by brand: http://www.allergysulfiteinwater.com/index.html
. I don't know how accurate it is. I don't have a problem with Perrier, but I only sip a little and don't have the true allergy. Meantime, you might try distilled water if you can find it where you are.
Some people have posted success taking Zyrtec or Allavert daily to prevent reactions to sulfite in water. At least those won't put you to sleep like Benadryl, although I keep that in my pocket (pill form, not liquid which is sulfited) to chew up in emergencies.
|Posted By : ATXfred - 10/22/2011 3:19 PM|
|Thanks, Alcie. Actually, I keep a screen print of that bottled water chart on my phone so I have it with me all the time. |
I'm home now and feeling MUCH better. My BP and pulse are getting back to normal. It was a little scary the last couple of days, but I found a couple of kinds of water that seemed to work. I found a website that "rates" bottled water worldwide and it had some useful information (not sure how accurate or updated but something to work with) http://www.mineralwaters.org/
As you say, distilled was what I was looking for--or reverse osmosis. I found enough to squeak by till I got home. Whew. I do take loratadine (claritin) daily, though I was not taking it over there, as I didn't think I'd have pollen problems. I'll re-think that tactic! I guess I'll also be re-thinking any world travel.
I really wish a local allergist had some experience with this, but I called around a couple of months ago and none of them do. The allergist I was seeing just gave me a link to http://www.aaaai.org/home.aspx and said good luck with that--just avoid them. I'm looking for a new allergist. With 1% of the population having problems, you'd think there'd be more than one or two places in the entire country that have a grasp on this issue. I guess it doesn't pay enough.
Thanks again, I'll be back with updates as I find more and experience (!?!) more.
|Posted By : flowerpetal - 10/22/2011 7:13 PM|
Another newbie here! Just wanted to pass on my story - Today I woke up with hugely puffy eyes and headache (again!) and wanted to find out why this is happening to me so frequently. I thought about what I had for dinner last night and the last time it happened and boiled it down to a large amount of garlic being in the food. So I googled these symptoms and came across sulphite sensitivity. Reading further I couldn't believe my eyes - so many symptoms were relevant to me and things started to whirr in my head.
about 8 years ago I had a reaction to Bactrim and came out in a rash all over my body
I have never been able to eat dried fruit esp dried apricots without my stomach gurgling and inevitable diarrhea
Itchy eyes and mild rash on eyelids when visting a local area which is very sulphuric - boiling hot sulfur water pools, steam and mud
Depression - Currently taking high dose of antidepressant - with lethargy and very tearful times
Indigestion with just about every type of vitamin supplement
Waking up with extremely puffed out eyes - looks like they are injected with some kind of liquid!
As I sit typing this in bed I am crying and excited at the same time. Happy to may have found an answer to get my life back on track I am anxious to get on and find out if this really is the cause of my problems.
Compared to others in this forum I realise that my symptoms are milder than others but I really am relieved and anxious to explore this condition more.
I welcome any feedback and support direct to my email! ( i am particularly interested in any info/success with vitamin b supplements)
Also would like to hear from anyone in New Zealand who has visited a practitioner who has helped them
|Posted By : Alcie - 10/23/2011 8:01 PM|
|Welcome to the forum, flowerpetal. If you put a few words into the searchbox at the top of the page, where it says "google custom search," right under "join healing well," you will come up with loads of older threads to read. they are pretty much as current as ever and there are a lot of links to check out. You'll be busy!
The best way to find out if you really are sensitive to sulfite (sulphite in UK) is to keep a good food log. I like to use a calendar with a page for each day. Write down everything you eat and drink, all medicines, the time you consumed them, and your reactions, with times. People who get migraines can get reactions up to 2 days after eating their toxic dose. For me, with mainly a gastric reaction that can trigger tachycardia, the reaction is usually about a half hour to 2 hours after I make my mistake.
There are sensitivities to other things, like MSG, where a lot of the foods are the same. So don't jump to conclusions too quickly. Working with an experienced allergist helps too. Mine was the person who set me on the food journal. She also had me do "challenge testing" after I had a list of foods. I had to eat increasing portions of the ingredients in a suspect food. That's in the threads in the search box too.
Some people have a true allergy, not just a sensitivity, to sulfites. That will give you true allergy symptoms, hives, closing throat and such.
You can get a skin reaction to sulfite preservatives in lotions, things used to clean skin for surgery, immunizations, etc.
You probably have a level of sulfite that triggers your reactions. It's not usually like a peanut allergy, where the tiniest bit causes symptoms. So don't get hysterical and avoid everything! Some of the links will lead you to finding out how much is in certain foods. I can tolerate about
2000 mcg (micrograms) a day, and even get a slice of pizza now and then. I particularly like the http://www.learningtarget.com/nosulfites/index.htm
. link to find out how much is in processed foods. Example: Once you figure out that processed corn products have a certain amount in ppm (parts per million) you can calculate from labels if you have to avoid the food.
|Posted By : pandoras_muse - 11/3/2011 12:36 PM|
I've just been reading through the posts on sulphites. I was mildly sensitive to them but recently went into anaphylactic shock after using a Neutrogena product called "T-Gel". I've written to Neutrogena, called but no response. I have continued discomfort in the six weeks since that reaction. I was wondering if that caused a chain reaction to all sulphites? Is that possible? For instance, I take Trazadone for depression, and codeine contin for fibromyalgia, does anyone know if these drugs have sulfites in them? Can the dose I received from the shampoo still be affecting me? And I am hypersensitive normally, from PTSD. But lately I can't tolerate the TV, light, noise or going outside at all. Has anyone had this symptom from sulfites? Thanks.
|Posted By : Alcie - 11/3/2011 6:18 PM|
|Hi muse. Welcome to the forum! We're not doctors here, so take what we write with a couple grains of salt, and talk to your doctor for professional advice.|
Have you been diagnosed with a sulfite (sulphite) intolerance?
I looked up trazodone on Drugs.com and found no sulfite in it or its "inactive" ingredients. The website did note anaphalactic reactions though. I know I react badly to it.
I don't know anything personally about codeine contin, but wikipedia says it causes depression and allergic reactions too.
Neutrogena T-gel seems to have coal tar in it, so that could be a source of sulfite. I personally wouldn't use it unless it was recommended by a physician for psoriasis or something. I do use Neutrogena products and have better luck with them than most soaps and shampoos and body washes. I would look at the trazodone and codeine before blaming the shampoo.
People who get migraines - is that what you are having? - can be having reactions to sulfite consumed up to 2 days previously. The only way to check this out is to keep a really good food journal. If you write down everything you eat, drink, all meds and the times consumed, and then write down your reactions, you can go over the journal and find out if there is any connection between your reactions and what you ate.
After finding some suspect foods you can do a "challenge test." I've posted lots on this in other threads. You can look it up by putting the words in the search box at the top of the page.
|Posted By : sdss1377 - 12/1/2011 2:07 AM|
|I am allergic to sulfa, sulfates and sulfites. Sulfites give me cramps in my feet and calves and thighs.|
Sulfates give me cramps in my colon and intestines and I end up in the ER. sulfa would probably kill me.
Sulfites also dry out my skin and hair they are in soaps and shampoos. Sulfites and sulfates are also used as preservatives in food. Sulfates are also a mineral in grapes and other foods. Natural or organic foods are the best bet when trying to avoid these and high fructose corn syrup.
|Posted By : sdss1377 - 12/1/2011 2:11 AM|
|I am not sure about your medications but the best thing to do is always ask your pharmacist and look up your meds online for ingredients and binding agents. I just recently had an infection in my eye and the dr. prescribed an antibiotic to take 4x per day for 7 days. I asked the pharmacist if there were sulfates in the Rx and sure enough there was. I refused to take the Rx and relied on my faith in healing. I looked up the antibiotics for eye infections and they all had a sulfate. I did not want to take the chance of losing my eye or my life.|
|Posted By : Alcie - 12/1/2011 4:18 PM|
|Hi ssds, welcome to the forum.
I'm not quite sure if I understand your reactions. I suspect you are a little mixed up between sulfites and sulfates. Sulfites are SO3 and Sulfates are SO4. Sulfites are found in grapes, pork, onions and such naturally. Sulfites are often in medicines as preservatives and can break off, but don't always do so, when they are part of the compounds. Sulfates in medicines are harmless.
The body cannot live without sulfates inside, but in shampoos and such they can cause lots of problems. I get the dry hair too.
The prescription antibiotic eyedrops for eye infection has never been a problem for me. I suspect you were prescribed gentamycin sulfate. It's not a sulfite! It should not trigger your allergy problem. There are also OTC eye drops without preservatives. I use Genteal brand successfully. It comes in various strengths of "gell-ness." Of course this isn't an antibiotic.
You have to try the antibiotics to see if they react for you. I haven't had a problem even with sulfa drugs, but I only have the sensitivity. I don't get the oro-pharyngeal swelling and hives of the true allergy some people have. If you just have the sensitivity, just trying it shouldn't be a serious problem, although if you've already had a reaction, then you have to avoid it. But you can, and should, check with a really good, experienced allergist!
OTC drugs are just as bad as prescription ones. Liquid meds are the worst. It's the coloring and sweeteners and flavors. Liquid Benadryl is loaded with sulfite, but the tablets are fine.
I carry around 2 pages of meds that have given me reactions. I've needed it a few times. I can't remember everything. My reaction is serious - stomach refluxing, then tachycardia that can send me to the ER.
They also have a book for sale with the amounts of sulfite in medicines, which I did buy and have found very useful. I am not selling the book, nor do I receive anything from the person who has it available. I recommend reading and studying the free stuff first, before buying anything.
There's a lot of difference between having a tiny bit of sulfite in something and going beyond your daily tolerance. The free book tells you how to calculate how much you are consuming.
I hope I haven't scared you off. I don't mean to criticize. I've just been studying this stuff since it gave me a heart attack many years ago. It's pretty serious stuff, and I learn as much from others as I teach them. I can also be wrong. I'm just a really old patient.
|Posted By : Stella5 - 12/7/2011 2:29 PM|
|Hello. I am a new member of this forum. I am suspecting sulfites are my problem, well possibly one of them anyways. I am glad to see there is some support out there for those of us going through this. This has been very difficult to figure out, and is frustrating to not be able to get the support from family and my doctors (because there is no way to test for this.) I did just find a doctor that said he could do a challenge with me by feeding it to me, so we will see how that goes!|
Thank you for being here!
|Posted By : cutedame - 12/13/2011 4:11 PM|
|Hi I am new to the forum as well...have been dealing with sulfite allergy since 2006...had gastric bypass in 2004 and then 2 years later was eating balsamic vinegar with bread and broke out in hives from head to toe...continued happening after wine etc...so that is how I became aware...then in 2009 I came down with a wheat allergy...this has made my life hell..having both of these...and gastric bypass...which limits what I can eat already...it really is torture...now reading about vitamin probs leading to this it is all making sense...cause gastric bypass causes vitamin deficiencies in B vitamins, iron and calcium...fabulous eh?|
Would love to hear if anyone else has had stomach surgery and is going thru this as well..I need support big time...cause I am going crazy when it comes to what I can and can't eat...arghhhh!
Love to you all and thanks for the support!
Wheat, Banana and Sulfite allergies.
|Posted By : Alcie - 12/13/2011 7:30 PM|
|Sounds like you could possibly have the true allergy to sulfites. Have you seen an allergist for this? It's really rare to have more than just the sensitivity, although we have members who have the allergy. I would recommend you get some good medical testing from an allergist who has had experience - ask before just going to any old allergist. Some don't even believe in it.
I've had a relative who had a gastric bypass. She needed loads of vitamins. You have to watch biotin - heavy on sulfite! Vitamins don't cause the allergy, but that one can cause a reaction if you are allergic.
Read the book I recommended a couple of posts up. It will tell you how to calculate how much sulfite is in foods and meds.
Best wishes. Let us know how it's going!
|Posted By : Razzle - 12/14/2011 9:13 PM|
|But sulfite reactions can certainly mimic severe allergic reactions - some of my sulfite reactions can be considered to be anaphylactoid, and require steroids and antihistamines as treatment (just as any other anaphylactic reaction would).|
Cutedame, I think it was you who emailed me...I've replied, in any event.
Chronic Lyme, Bart., Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut dysmotility & non-specific inflammation, Lupus, Osteoporosis, etc.; G-Tube
Meds: Flagyl, Domperidone, Claritin, Singulair, Andrographis & other herbs, homeopathy, supplements, etc.
|Posted By : Stella5 - 12/15/2011 9:32 AM|
|Does anyone know if the antiobiotic Rifaxamin contains sulfites? |
Also I recently (within the last several months) rapidly developed sensitivities to soy, lactose, and it seems sulfites.
Doctors think I may have Chron's or some bacterial overgrowth. I wondered if anyone ever eats at a restaurant anymore, and if you do what you order. I haven't been out in a long time.
Also, I need to gain some weight and would love to hear ideas of your favorite foods or snacks!
Thanks much, Jen
|Posted By : rmtmom - 12/15/2011 1:00 PM|
Is it possible to have temporary sulfite intolerance? This is the 3rd occurrence of it and it always seems to start with my 10 year in the swimming pool. For some reason if I follow the pool with an epsom salts bath, he's okay with it. But if I forget, he starts coughing and then his stomach goes haywire. He says the coughing is because of his stomach (acid reflux?) and his poop starts showing undigested food. The first episode lasted almost a year and he kept losing weight (wasn't absorbing nutrients from his food). I was so stressed, doctors galore (none could find out the source). He has asthma (and allergies) so the coughing aggravated it (was put on inhalers, steroids, etc) and none of the docs would believe that it was the stomach). My current theory is that the swimming pool probably has a copper ionizer and copper depletes molybdenum which starts his episodes and that the epsom salts (magnesium sulfate) counteracts it (when I remember to give him the bath). This article helped a lot: http://www.newtreatments.org/Sulfur/ga/252/Autism%20and%20phenol-sulphotransferase - very long article.
Anyway, fast forward 3 years and I learn something new each time. At least now I think I have the right term - sulfite sensitivity. At first, I thought that it was phenol sensitivity because so many of the foods overlap. When he's not in his episode, he's fine with pork, garlic, onions, broccoli, etc. He has a lot of allergies so I've been cooking from scratch for him all his life so it's a bit easier than for all you guys who have been eating processed foods.
I have a few questions: Do you know if potato chips (eg Cape Cod potato chips) have sulfites? Is taurine okay - it's a sulfur amino acid but it helps with digestion/bile? Some of the sites say taurine is a no-no. He's already taking a lot of folate/B12 for his MTHFR (folate genetic mutation) and have added molybdenum away from other supplements. I've also been giving him histidine which is an amino acid that produces histamine and involved in digestion but I'm a bit hesitant with it because it chelates minerals. Don't know if some of you want to try it as it's involved in CDO (cysteine dioxygenase) which is an iron-histidine enzyme involved in the sulfur oxidation of l-cysteine (see www.cfsn.com/sulph.html). His amino acid profile from 3 years ago shows low histidine and high cysteine so there some breakdown happening somewhere.
Anyone with any ideas about how to fix his stomach/digestion? He's driving me nuts (his food has no taste without the onions and garlic) and being restricted from pork, broccoli, etc. I've tried glycine - supposed to help produce bile and he can't swallow pills so no HCL, testing for acid reflux, etc. He coughs and gets a stuffy nose when he has stuff with sulfite in it. BTW, zinc sulfate ( Metagenics Zinc Drink) seems to make the stuffiness better (I'm giving the supplements separately so they don't counteract each other). Will giving him supplements in sulfate form help eg chrondroitin sulfate (glucosomine sulfate is made from shellfish to which he's allergic)? Something in some system is broken and I need to jump start it because he's okay with these foods when he's not in his "episodes." TIA.
|Posted By : rmtmom - 12/15/2011 2:38 PM|
|Also, he had a test called Nutreval (http://www.truehealthlabs.com/nutreval-test/) done 3 years ago that has really helped me try to muddle through this. It's expensive but it tests for amino acids, vitamins, and minerals. His amino acid profile was a picture of (some) deficiencies which caused excesses (buildups) of the others - like a system of tubes some of which were clogged.|
He has several things against him - MTHFR (which I think is the root cause of his problems - methylation), resulting in a deficiency of folate, causing a deficiency of histidine, resulting in the allergies (histamine), stomach problems (lack of stomach acid), malabsorption - resulting in a vicious cycle (lack of histidine and so on again). He also has Gilbert's Syndrome (elevated bilirubin - is that something to do with bile?) - dear husband's genes are I need a bio-chemist (that's what the pediatrician tells me when I tell him all this stuff).
|Posted By : rmtmom - 12/15/2011 4:42 PM|
|Do you put sulfites on your potato chips?|
There may be some sulfite agents used during the storage season which is usually between the end of September to mid spring.
Also checked his shower filter:
Thank you for your email. The Sprite Shower Filters do contain some calcium
sulfite, however, we are happy to make the filters with pure zinc and
copper. You can special order the filters by calling toll free
1791 Railroad St
Corona, CA 92880
Ph: 951-735-1015; 800-327-9137
Now, I'm wondering how much zinc and copper (especially since copper blocks molybdenum absorption) gets in his water. What a choice - chlorine/sulfites or copper (sigh).
|Posted By : Alcie - 12/15/2011 6:21 PM|
|Stella: Soy often has sulfites, and I've reacted to most of the products I've tried.|
I became lactose intolerant as an adult for sure, maybe had a problem with sulfites as a baby, since I didn't tolerate formulae well - lots of dextrose in them back then.
I have no problem with milk proteins, so I add a tsp of whey to my coffee, oatmeal ... It's a protein, quite different from lactose, a sugar!
Snacks - I don't really recommend eating snacks, but Cheez-It crackers, at least the regular ones, are pretty low in sulfite. Put them on top of stuff to add cheese flavor instead of high sulfite cheese.
rmtmoom: Doesn't sound quite right for a sulfite intolerance. You sound very knowledgeable. I'd guess you are following with a good doctor. Avoiding processed foods is a good route for all of us. At least we know what's in our diets.
Instead of onions and garlic I use single spices in moderation - tiny pinch! - never any mixed spices! Fresh is best, but dried ones are OK. Pepper has sulfite! I don't use much salt, don't need it with the right spice! (except beef) My mom made up a real neat chart. It's taped inside my cupboard. Here's part of it:
Basil - chicken and tomato soups, beef, pork, lamb, chicken,green beans, tomatoes, squash.
Dill - carrots, cauliflower, peas, potatoes, cottage cheese, chicken, rice dishes, tomato soup.
Marjoram - avocado, chicken and potato soup, burgers, beef, pork, lamb, fish fillets, zucchini.
Oregano - vegetable juice, stews, burgers, chicken, boiled eggs, broiled seafood, broccoli, cabbage, tomatoes.
Rosemary - chicken, pea, spinach soups, beef, game, poultry, scrambled eggs, fish, lentils, peas.
Sage - chowders, chicken and bland cream soups, cold roast beef, pork, lamb, veal, chicken, turkey, poultry, fish fillets, Brussels sprouts, Lima beans, squash, tomatoes.
Thyme - gumbo, borsch, roast, poultry stuffing, scrambled eggs, tuna,chicken salad, carrots, potatoes.
Post Edited (Alcie) : 12/15/2011 4:26:16 PM (GMT-7)
|Posted By : rmtmom - 12/15/2011 6:22 PM|
|Apparently, sodium sulfite is used in swimming pools.|
|Posted By : rmtmom - 12/15/2011 6:57 PM|
All the doctors think I'm crazy. I'm just muddling along trying to fit the pieces together - being thankful that he's still young enough to listen to me (as opposed to a teenager). I'm hoping that he's not getting worse with each episode (exposure) and praying that he'll recover (as he did the other 2 times - not that it'll take a year like the 1st time). His diet is already so restricted from his allergies that I can't imagine if this sulfite thing is permanent. His weight is borderline failure to thrive as it is.
Thanks for the list of seasonings.
So no one has any idea about whether sulfates are okay? My reasoning is that if the sulfites aren't being converted to sulfates which the body needs then maybe supplying them via other avenues (magnesium, zinc, chondroitin sulfates) would help unclog his system and get his stomach working properly again.
|Posted By : Alcie - 12/15/2011 10:21 PM|
|rmtmom - I'm fairly confused as to your son's diagnosis. What sorts of doctors have you had him to besides the general pediatrician? Any pediatric specialists? Since he seems not to have problems all the time with foods that contain sulfites, I wonder if he really has the sensitivity. I got my best information from my second allergist. She had me keeping a good food journal then doing food challenge testing. I wouldn't recommend doing challenge testing with foods you already know cause reactions though! Especially with a child this should be done under the guidance of a doctor.|
Sulfates that occur in normal foods should be OK, but don't overdo anything. We're not prescribing anything here. We're not doctors, just patients. All we can say is what's worked in our limited cases, and that probably has nothing to do with your son. I would absolutely not add any chemicals without being told to by a doctor for a specific deficiency or treatment!
|Posted By : rmtmom - 12/16/2011 12:33 AM|
|Alcie, there is no diagnosis. 3 years ago when he had his 1st episode, I took him to the pediatrician (antibiotics for stuffy nose - claimed sinusitis), ped. pulmonologist & ped. allergist (for coughing) - got inhaler & steroids, ped. gastro for stomach - (claimed acid reflux - prescribed pepcid AC), ped urologist (abnormal urine test) while avoiding the problem foods. I eventually took him to a doc that dealt with autistic kids (he's not - just has a lot of the same symptoms). He ran a lot of tests (that's how I found out about the genetic mutation) but his primary focus was chelating him of mercury. He did run the Nutreval and that info together with much reading on my part explained why he was having a lot of the problems he had.|
When he's healthy, his body processes the sulfites fine. But whatever's in the pool that messes him up, suddenly his body can't process them and he coughs like crazy when he eats them & gets stuffy nose. I recently found this at http://www.beatcfsandfms.org/html/Sulfides.html
Signs of a Sulfite problem
Below are several clues that one is sensitive to sulfites (which probably means the sulfite oxidase enzyme is down):
1) One becomes tired after ingesting one of the foods, listed above, that contains sulfites. One can look at the food label to see if the product contains sulfites.
2) One coughs after ingesting sulfites, due to the impairment of the lung ATP energy.
3) One has asthma.
4) One develops low blood glucose (sugar) after ingesting sulfites (since sulfites disrupt the regulation of blood sugar).
5) One gets a headache after ingesting sulfites.
6) One experiences itching and reddening of the skin after ingesting sulfites contained in foods, drinks or drugs.
The allergist won't even diagnose him with asthma because whatever score he has when he blows into that peak meter (?) doesn't qualify. He's not on medication (only when he has a bad cold) because I am careful with his environment (air cleaner) and his food (organic meats, lots of fruits and vegs). And he doesn't use any toothpaste, sunscreen, lotions, etc. The doctors treat the symptoms but as far as finding the cause, I'm on my own trying to piece things together. Maybe I just haven't had good luck with docs but they all think the solution is drugs, drugs and more drugs when I prefer the natural way.
Sorry for the long epistle.
|Posted By : Roxana - 12/16/2011 2:08 PM|
|I just joined this forum today and very pleased to read all that everyone has to say.|
I just joined this forum today and very pleased to read all that everyone has to say.
I have been diagnosed with a sulphite/sulphate allergy and also an iodine allergy since 1996 when I fell into anaphylactic shock. After that, I spent a whole year eating only freshly cooked foods (because the doctor’s said that after 20 minutes, cooked foods start to decompose and develop fungi and sulfites). During that year I could only drink water and eat fresh foods (nothing canned, frozen and nothing from restaurants or salad bars). After the year was through, I started re-introducing items.
I have eliminated all meat and milk products, fructose syrups, eggs, and certain fruits from my diet and I feel much better. People say that they couldn’t do that, but if they had one serious asthma attack, I guarantee they would change their minds.
I wanted to warn people that although there are many products in the States with a circled “s” warning of a sulphite containing products, there are others that don’t mention it. Olives are a good example, they use sulphites in the maceration process. Same with pickles. I actually ate a pickle yesterday and has a horrid asthma attack, called Vlasic and asked because it wasn't mentioned on teh label and they are in the process of getting back to me.
I just wanted others with the same allergy to know about it.
|Posted By : Roxana - 12/16/2011 2:14 PM|
|Posted By : Alcie - 12/17/2011 9:33 PM|
|Hi Roxana, welcome to the forum. It sounds like you have some serious reactions to foods.|
I'm curious about the pickle reaction. According to my book, a Vlasic Kosher Dill pickle has only 2 micrograms sulfite per pickle. I wonder if something in the added "flavor" could have caused the problem. On the other hand, if you consumed much of the vinegar - 1Tbsp apple cider vinegar contains about 150 micrograms sulfite, which could trigger someone with a true, anaphalactic-type reaction.
I've never noticed that circled "s" but will look for it.
Going vegan, basically what you've done, is good for a lot of people. If you look up the video "The Last Heart Attack" with Dr. Sanjay Gupta of CNN, there's a lot of research for eating that way. Since I can't eat soy and some nuts, I can't even go completely vegetarian though. I wouldn't have a source of protein. I do avoid lactose, beef, pork.
Salad bars are supposed to be clean today. It's been illegal to spray them with sulfites for a long time, but was a concern when you were diagnosed.
You've brought up some important points! I hope you will continue to post, and avoid pickles!
|Posted By : Razzle - 12/20/2011 10:07 AM|
Yes, the stuffy nose could be from sulfites. The smell of my Husband's ham (loaded with sulfites, so I don't eat it) plugs up my nose...
It sounds like the swimming pool exposure overloads his enzyme pathways and it can take time to recover. Have you had the full methylation panel from Dr. Yasko's lab done on him? It might reveal other methylation issues in addition to the MTHFR variant, and if he is hetero for the SUOX or CBS variants, then that could explain his temporary intolerance when the enzymes are overloaded.
Yucca Root (not to be confused with Yuca Root, which is a completely different plant) can help some with the sulfite processing indirectly because it helps with the excess ammonia generated by the malfunctioning sulfite enzyme.
I also make sure I am getting enough zinc, B12, molybdenum, magnesium and iron - these are the other nutrients that are needed for the sulfite enzymes to function correctly.
GABA and nettle leaf are also helpful for me.
And for my nose, I find fenugreek and thyme very helpful...I take capsules (2 at night, 2 in the morning) of something called FenuThyme made by Nature's Way (I have no financial connections with this product/company) because it is a perfect combination of the thyme and fenugreek. It keeps my nose from getting too plugged up.
I wonder if there could also be a candida issue? Systemic candida may get aggravated when he is in situations where other molds or fungi are around...wet environments are particularly prone to mold.
Does he take any probiotics?
Also, you might want to double check all his asthma meds - sometimes they add sulfites to those, and it may not even be listed on the label (things like polysorbates, citric acid, flavors/colors, etc. can contain sulfites but the drug manufacturer won't specify on the label whether these ingredients are sulfited).
Oh, and yeah, taurine isn't good because I think I remember reading something about it getting converted into cysteine or something like that...not sure. But I know taurine is on the "no" list for sulfite intolerance.
Feel free to email me if you have more questions - click the envelop icon under my name on the left side of this post...
Chronic Lyme, Bart., Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut dysmotility & non-specific inflammation, Lupus, Osteoporosis, etc.; G-Tube
Meds: Flagyl, Domperidone, Claritin, Singulair, Andrographis & other herbs, homeopathy, supplements, etc.
Post Edited (Razzle) : 12/20/2011 8:10:18 AM (GMT-7)
|Posted By : melnits - 12/27/2011 11:25 PM|
|Thank you for being Here!|
Felt very lonely in this!
Any chef in the making! I need sulfite free recipes?
by the way I also reacted to Kale, Kelp and Pmegranate juice! Anyone?
|Posted By : alphagirl - 1/3/2012 9:39 AM|
|Razzle -I am very interested that the nettle helped - I was drinking nettle tea, but felt like I was having a reaction to it. How does it help you? I am wondering if instead of a reaction I was actually detoxing - sometimes things get worse before they get better! |
Also, what B vitamins do you take? I cannot find any without sulfites added, and I am really low. I have some Country Life B caps - I thought I would be ok because they are vegetarian, but then I discovered that vegetable cellulose is sulfited so now I am scared to take them. Please let me know which supplements you take, I would love to find some non-sulfited ones!
|Posted By : alphagirl - 1/3/2012 9:42 AM|
I have been working on a sulfite free recipe site - It is in my free time so I don't have tons of recipes yet, but check it out:
Let me know if there are any recipes in particular that you are interested in and I will try to whip something up!
|Posted By : Red_34 - 1/3/2012 9:51 AM|
|What an awesome site you created! I'm sure many people will appreciate this :) Now! If you could create a sulfite free red wine than it would be golden! LOL Just kidding, I love red wine but the sulfites give me migraines.|
Moderator-Allergies/Asthma and Alzheimer's, Co-moderator-UC
Diagnosed Left sided UC in '92 - meds: 6mp, Colazal, Remicade and Bentyl*Unable to tolerate ALL mesalamines*, in '11 diagnosed with IBS, Diverticulosis, Fibromylagia..I also have Sacroiilitis, Scoliosis, Raynauds, OA, PA, Rosacea, Psoriasis, Dry Eye and allergies controlled by Zyrtec and Singular
|Posted By : alphagirl - 1/3/2012 10:02 AM|
|Thank you, Sherry! The learning is quite a journey and the more knowledge we share, the healthier we will all be!|
Actually I was drinking red wine last night - I can tolerate the Orleans Hill Zinfandel and Shiraz and Cabernet that are labelled "no sulfites detected" in moderation. I used to drink Our Daily Red, also labeled "no sulfites detected" but I felt like I was starting to react to it, so I switched over. I haven't found a white I don't react to yet.
|Posted By : Red_34 - 1/3/2012 10:04 AM|
|Hmm I might have to check those out. I love the Zinfandel's. :)|
Moderator-Allergies/Asthma and Alzheimer's, Co-moderator-UC
Diagnosed Left sided UC in '92 - meds: 6mp, Colazal, Remicade and Bentyl*Unable to tolerate ALL mesalamines*, in '11 diagnosed with IBS, Diverticulosis, Fibromylagia..I also have Sacroiilitis, Scoliosis, Raynauds, OA, PA, Rosacea, Psoriasis, Dry Eye and allergies controlled by Zyrtec and Singular
|Posted By : Alcie - 1/3/2012 7:14 PM|
|I posted a few tips down in melnits' thread.|
|Posted By : Alcie - 1/5/2012 10:10 AM|
|Hi henry - welcome to the forum. Are you sulfite intolerant, or do you have asthma?|
I appreciate your post and don't mean to be ignorant or mean, but I have to add to what you've said.
The government thinks that sulfite allergies are found mostly in people with asthma, and lots of websites repeat this. Some people who react to sulfites with migraines or GI disturbances or heart arrhythmias often go misdiagnosed. I'm one of those. My cardiologist and GI docs still don't really believe me, but my allergist does, and I've recorded my reactions under her guidance for years to prove it.
FDA only requires that foods containing over 100 ppm list the presence of sulfite. That's way higher by a factor of at least 2 for portions that affect me, maybe 3 - 10 for people who react to small amounts, eat a larger portion, or have the throat-closing type of "true" allergic reaction.
You are right that it's banned on fresh fruits and vegetables, but it's allowed and used all the time on fresh cut potatoes, shrimp and other seafood to prevent browning and black spot mold. You'll find sulfite listed on all boxes of dried potatoes. It's also very high in bottled lemon juice, and therefore in jams and lemon drinks, although not in the frozen juice. It's also sometimes used to bleach nuts, and is added to keep spray drier nozzles from clogging in corn starch, dextrose and other products. I'm now finding it listed on tortillas.
I won't even mention how many medicines are preserved with sulfite. That's a subject in itself. I'm having a problem right now with a prescribed nasal spray containing sorbital.
I don't mean to down your post, only to caution about websites that copy information without researching it. Please keep posting. Everyone is welcome and valuable as a member of the community! You're likely to have information I don't know about. Feel free to disagree with me; I'm not a doctor!
|Posted By : Faerie - 1/15/2012 6:54 AM|
I am still learning about sulfites. I have had chronic urticaria and massive hives for the past 13 months. After many tests and no help whatsoever from doctors, I tracked it to a website called Fedup which helped me learn about sulfites. I react within minutes to tiny amounts.
I am confused about a few foods. Could I have some feedback please.
TEA......is it only teabags or does loose-leaf tea contain sulfites? Does LL tea contain natural sulfites or is it all sprayed?
COFFEE......I drink two cups of fresh-brewed ground coffee a day. I can find no definite mention of real bean coffee and sulfites.
ICEBERG LETTUCE........Does this have natural sulfites or is it sprayed? I wash lettuce in a sink of water with two tablespoons of hydrogen peroxide 3% to dissolve any spray.
COCONUT OIL ......I want to use this as a skin moisturiser......I know dessicated coconut and coconut milk has sulfites......does coconut oil have it too?
YOGHURT.......... I thought some yoghurts were OK but just read that it is not OK because it if fermented. I am assuming fermented stuff creates sulfites. IS that right?
BAKING POWDER .....Australian name for product......contains wheat starch, raising agents 500, 450.575,541
Thank you for any help with defining these foods. It sure takes a while to set up a list.
I have changed to these products:
Toothpaste - WELEDA
Soap - CASTILLE
Shampoo - WILD SHAMPOO
Soap powder - EUCO FRESH
Toilet Paper - I have always used unbleached.
Nut spread - Melrose Almond, Brazil & Cashew
I dont SEEM to react to these, though as I am still on four times the packet dosage of Telfast by allergists orders to keep the hives/itch at bay it is hard to tell. When I eat a food I react within minutes regardless of this dose.
Glad to have found this forum. Rick has been a big help to me as well as Sue Dengate from Fedup. So grateful for these wonderful sources of information to help me feel I am not alone and have some control over my life still.
Chronic Hives & itching Urticaria since Christmas Eve 2011
Fibromyalgia since 2006
PTSD - panic attacks - well managed - no symptoms now
Depression - well managed
Hyper-reactive to Sulfites within minutes of eating tiny amounts
Still sorting out where the buggers hide
Looking into possibility of copper excess being catalyst of it all
Moved into old house with old copper pipes three years ago
|Posted By : Faerie - 1/16/2012 11:55 PM|
|I would love to have a response to my email if anyone is able to give me some ideas please. |
From what I have read so far Alcie, it seems to me that maybe I do have a proper ALLERGY to sulfites as opposed to an intolerance.
What do you think? I never get stomach problems or heart problems, just mainly hives within minutes, wake up with huge hives every day, sometimes swollen lips, sometimes swollen eyes and face. Responses seem to be within minutes to half an hour. Eg 2 sips of sherry = hives on abdomen within ten minutes.
I might be back at the allergist on Friday. Does it matter if I am allergic or intolerant? Does it matter if I know? He could do a skin prick with sulfites on me while I am there if I ask.
I am sure there were no IGE thingies (sound technical dont I?) in my bloods. Doesnt that mean there is no allergic stuff going on?
Chronic Hives & itching Urticaria since Christmas Eve 2011
Fibromyalgia since 2006, Rosacea
PTSD - panic attacks - well managed - no symptoms now
Depression - well managed
Hyper-reactive to Sulfites within minutes of eating tiny amounts. Still sorting out where the buggers hide.
Looking into possibility of copper excess being catalyst of it all. Moved into old house with old copper pipes 3 yrs ago
|Posted By : Alcie - 1/17/2012 1:31 PM|
My allergist says sulfite allergy or intolerance, as far as she is concerned, is all allergy.
She started me on keeping a really good food log/journal. I had to write down everything I ate or drank, all meds every day for a month. I was able to note certain meals, often certain foods or drinks, that triggered my symptoms.
Then she had me do "challenge testing." I had to eat ingredients of the meals, one at a time. I was to start with a small amount, say a teaspoonful, then waiting 20 minutes. Then if there were no symptoms I took 2 tsp, waited another 20 minutes, then 4,8,16 and stopped. I could do 2 items a day, one morning, one afternoon. Continue eating regular meals of foods that were not triggers, but leave time before doing testing. Of course if you are one of those people, usually the ones with migraines, you can react 2 days later, so you'd have to modify the test.
Your hives do sound like "true allergy." Of course I'm no doctor!
I haven't heard of a skin prick for sulfite. If there is one, let the forum know! I'd be awfully cautious about letting a doc use a full strength sulfite powder or strong solution if I had a true allergy! It could cause you to have throat swelling and not be able to breathe. Bring along some Benadryl! Not the liquid, just tablets and chew them. The liquid has color, flavor, preservatives - all sulfited. Many other IV and oral liquids and liqui-gels contain sulfites too. Plan to stick around for a while after the test in case there is a delay in your reaction. And since there may not be a test that has been documented, I'm not sure I'd believe a negative result. The food journal works!
Even if you don't have an "allergy" to sulfite, lots of foods that contain sulfites also contain other allergens. MSG is among those allergens. That's where the food log helps so much.
BTW I have reacted strongly to chashew butter, although I don't have a problem with some cleaner peanut butters. I can eat a couple of brands of yogurt, but not ones with gelatin or starch thickeners, certain artificial flavors and coloring. Gelatin, cornstarch, some other starches, and flavors and coloring are some of my biggest triggers.
Some brands of tea have sulfites. Find some you tolerate, and don't use bottled lemon juice. I don't have a problem with coffee, but powdered creamers can be triggers. I don't use coconut oil for anything, so I don't know about it. I avoid baked goods unless they are home made. All the grocery store ones here are loaded with preservatives. I don't know about baking powder specifically.
Best of luck!
|Posted By : Faerie - 1/17/2012 5:17 PM|
Thank you so much for the detailed explanation of how to do the food diary and challenges. It is easy to understand and do. I think I will follow that and see how I go. I believe I could also be reacting to salicylates and that is why I am having a problem with tea and tomatoes etc. I will keep the forum informed of anything I learn through all of this and any improvements I observe through any means.
|Posted By : motozona - 1/26/2012 3:31 PM|
|I to am sulfite sensitive and after reading your posts are more certaian than ever. |
Heres my question: Have any of you ever taken an antibiotic called Sulfamethoxazole?
I made a mistake when I over reacted to a mold situation and a Dr friend prescribed me this stuff to ease my mind..well all of a sudden after 45 years of perfect health with maybe 3 headaches in my life become a man with constant headaches and insomia. Depression sets in ( I'm Mr.Positive..***) and start becoming a self help junkie to find an answer. I read about the sulfite enzyme kill off from these class of drugs and understand why I can eat or drink normally anymore..thanks for everyones input on this site..MAN I thought I was losing my mind LOL
|Posted By : Alcie - 1/28/2012 6:33 PM|
|Motozona - Sensitivity to sulfites can be acquired suddenly. If you're very sensitive to sulfites sulfa drugs can set off a reaction, but no reaction should last if you stop consuming sulfites. It's possible something else is going on, or else you are continuing to consume sulfites from other sources. http://www.learningtarget.com/nosulfites/index.htm a good primer. Teaches you how to calculate the amount of sulfite in your meal. Sorry about the depression. A lot of people get it when they are in pain. You might want to visit the depression forum too.
I haven't heard about an"enzyme killoff." If I cut down on the sulfites I can eat just fine, ven enjoy a slice of pizza if I'm careful the rest of the day.
A good allergist can help you figure out if you have an allergy or a sensitivity. In the posts above Ihave described food logs and challenge tests. Or just put the words in the search engine at the top of the page. Don't do challenge tests without the OK or your allergist if you have a dangerous reaction!
|Posted By : motozona - 1/28/2012 7:05 PM|
| Thanks Alcie, Depression is long gone. Headaches and a niacin like flush however are almost instantanious after an almond joy, hotdogs or a glass of wine. Didn't understand the cause until recently. Hydration plays into the equation too. Thanks for the info. Peace and love|
|Posted By : mikemac - 2/12/2012 9:18 PM|
|hello, i have sulfite oxidase deficiency. and would enjoy very much sharing all i learned.. u cant depend on dr when it comes to dealing with this issue,. you will need to self educate yourself,. at least thats the way it is here in the USA,. the medical schools in the usa dont teach about this condition,so ive suffered all of my 42 years of mysterious health issues,. could list about 40 symptons,. here is the best data i found to help me deal with this rare condition,. and i dont belive it is so rare, its just rare to find it,. ive had to educate the drs of generics here about my condition and theyve had to study and read into all that i have learned to even begin to try to help me. and the only thing they could tell me is that they will help me live better and longer,. who knows how long. search this 10 page book online called NO SULFITES : HELP FOR FOOD ALLERGIS exelent data ,.|
|Posted By : mikemac - 2/12/2012 9:35 PM|
|also vitamins are loaded with sulfites,so dont be so quick to make yourself more sick,. u wont be able to process them,. you will have to research organic foods that contain the vitamins your body is low on,. i do go once a week for intervenous multivitamins,. this saves the body the preocessing that is cant do correctly. also i get methyl b12 shots oncea week,. and for sure i feel much better when i do this,. molybdenum is the cofactor in the deficiency,. bodys second line of defense when the enzyme deficiency is present. im not a dr but i have yet to find a dr who knows more then me on the subject,. and i been to at least 20 sdrs and called more then 100 ,. i did find one dr russel cancellari in southampton new york,. he was the dr who help me confirm my sulfite oxidase deficiency,. with my overwhelming data of records and tests and self doumenting my issues for all my life,. even been seeing a shrink for 17 years ,because of my degregating neurological problems that only got worse with time,. only to find out that the pproblem was not in my head but in my stomach,but gone misdiagnosed the sulfite oxidase deficiency eventually fried my brain and i was barely surviving ,and suffering with the worst case of depression,trying my best to get through one more day,. but great news was that as soon as the sulfite oxidase ewas reconized i read into it,. i read so much that i just keep reading the same things over again. and just changing my diet top organic foods and no more beverages, because beverages and fruit drinks are heavily latebd with sulfites,. just 3 days into the diet of no sulfites my life changed overnight and sytill seems to be improving daily. at 43 years i never felt so good. ,. and i dont see why this wouldnt work for anyone with this condition, . also i found out that with this defiiency even though my test came back negative, that i cant process GLUTEN. which is organic so be careful,. so research what is gluten. i cant have any wheat , barly, or rye,. or anything made with these products./ also anything made with corn is a big no no, for me it made my beely swell and ibs and inflation in all my organs,.|
|Posted By : Alcie - 2/13/2012 8:01 PM|
|Dear mikemac, welcome to the forum. Looks like you have done a lot of research!
Don't count out all fruit juices, just the fruit flavored drinks which are mostly sweetened water. It's the artificial sweeteners, colors and flavors that are the culprits. I looked at canned coconut milk in the store today and noted that on the label it even lists a sulfite preservative, so steer clear of canned drinks (foods too) until you read the labels.
Same for gluten. I seem to be getting wheat sensitive, but don't have celiac or a true wheat allergy. I can eat oats and barley just fine. I've done the food challenge testing. Don't try that if you have dangerous reactions though.
Corn is fine, but when it's processed into dextrose or corn starch or many other products it's sulfited.
I think there are a lot more people who have allergies and sensitivities just suffering out there.
|Posted By : mikemac - 2/13/2012 11:40 PM|
|absoluteley soo many people suffering unknowingly from sulfites and sulphur. i have a friend both him and his dad had kidney transplants. and they have all the telltale signs of sulfite oxidase deficiency . they can eat all seafood as long as we catch it, when they buy from the market they get so sick. the only difference between fresh caught and the market fish is the added sulfites to prevent browning. also nuts make them ill but when they shell them they haveno reaction. the exception is peanuts. peanuts unlike other nuts make alot of natural sulfur. fruit drinks wreck them,. anything dried,or in power form like flour and they get very ill. i tried all i can to supply this data to them and they laugh at me , believing that if this was so there wonderful dr would know all about it,. hey the dr didnt get it with his dad, so ofcouse the son had to get his kidney removed. and now they both waiting for there 2nd kidney transplant. but me with no medical schooling sees this clear as day. so hard to watch them suffer and know why., very sad. just want to strangle there dr. ofcourse the dr doesnt want this to come out,. because he would look very bad becuase most likely they didnt need kidney transplants. unfortunately they never addressed the root of the problem. also the corn naturally makes its own sulfur. im a walking test kit. living with sulfite oxidase deficiency. misdiagnosed and drugged up the drs had me for 20 years as my health and mind just worsened daily. also even alot of bottled waters are loaded with added sulfites at the factoory to advoid clouding. and iced tea and lemonaide just the worst,. also aqufina, san pelligrino,dasani,and my figi all loaded with sulfites. ive only found one juice that doesnt make me ill. !00 percent organic coconut juice, by harmless. i drink about 5 a day with no issues.|
|Posted By : mikemac - 2/13/2012 11:51 PM|
|dear alcie that 940 post was for you.the one before this i guess. also i found buying organic, with usda label limited my ill reactions,. exceptions were anything dried becuase they use sulfur and its considered organic,but makes me very ill.and the gluten also organic makes me very ill. i guess more people will have to get very ill and or die before they change that too. and not all wheat barley and ryes are gluten infected ,but its a big gamble i cant take. i had 7 anaphalic shocks in the past 2 years, ive used up near all my cat lives,lol. i like to live longer ... thanks for your input, means alot to me.|
|Posted By : mikemac - 2/13/2012 11:58 PM|
|dear Alcie, i also tested negative for ceoliac disease. but have a severe reaction to gluten. thats signs of sulfite oxidase deficiency. my allergy dr dr russel cancellari in southhampyon new york confirmed this,. he the leading expert in the usa on the sulfite oxidase deficiency. he was involved in a 10 year study on people with sulfite oxidase deficiency. stage two of sulfite sensitivy. basically means that my sulfite sensitivy went from causing me ,ibs, headaches, brain fog, become LIFE THREATENING,like the anaphalix shocks. that send my to the er fighting for my life.|
|Posted By : Alcie - 2/14/2012 10:10 AM|
|Dear mikemac -
Since you have a serious allergy, sounds like maybe a "true allergy" to sulfites, you should never try challenge testing without your doctor present. It's even more unusual than my sensitivity.
There's more than one kind of gluten. Have you tested for rye, barley and oats? Some people can eat one but not another. Oats are supposed to be gluten free, but some people can't eat them.
Have you read the news published about the new genetically modified wheat having a new type of gluten we can't digest? I haven't looked for it online, but it was published in "Bottom Line Magazine," which does have an online magazine. The recommendation is for people to go back to older types of wheat and foods like spelt and other grains.
In your case I would recommend http://www.learningtarget.com/nosulfites/index.htm
, if you haven't already. I'm not recommending buying anything to to anybody, but I bought Rick's book for the tables, which most people don't need, but I needed to do calculations of amounts of sulfite in some of the meds I take. Most of the food information anyone with a sensitivity needs is in the FREE book online. I have a possibly life threatening reaction - tachycardia - so I need more information and have a science education to make use of it. All of the book except the tables is in the FREE online book! I check back now and then because he makes revisions often. This is the only website I have found that doesn't just copy what is available on dozens of other websites and has research to back it up.
|Posted By : mikemac - 2/14/2012 2:40 PM|
|dear Alcie, i use the no sulfite like its my bible with an open mind. i found couple of things that i dont agree on, but the other 99 percent is very well put together,probably the best data out there ,and its free on line. also keep in mind with the oats. they are gluten free,but heres the catch gamble,. most farmers who grow oats also grow wheat ,barly and rye and the stock piles are usually just few feet away from eachother so often the wind blown wheat and barly,and rye will cause cross contamination. so i recomend everytime you stock up on oats,try just a little to be sure that that batch you brought was not contaminated with gluten.... im reading about your condition, be sure to stay hydraded togive elasticity to the over worked muscles of the heart. happy valentines.|
|Posted By : Alcie - 2/14/2012 7:49 PM|
I agree that some things in some editions of the book my be questionable. But it's by far the best reference I know of for data, calculations, and more. Did you get the paper edition?
My reaction of tachycardia in response to esophageal (and other gut irritation) is called cardioesophageal reflex, aka linked angina. There are several research papers online describing it. I take half the smallest dose of atenolol now because the reactions were getting too frequent. I take another whole dose if I have a tachy event lasting longer than an hour or if my heart rate gets over 140.
At least I only have the sensitivity to sulfite, not celiac or a "true" allergy. I've been hospitalized for a couple of bouts of an abscess from of what was thought to be diverticulitis (it was really on the appendix), was made NPO, then forced to eat a protein substitute made from the same stuff as gelatin - pig skin. I had my book with me and was able to calculate that a single dose per day would be under my tolerance, as long as I didn't get too much IV dextrose. I've had to refuse some meds in emergency situations, carry my 2-page list with me all the time, short list on a bright yellow card in my wallet.
I eat oatmeal every day because I don't tolerate eggs well, only rice cereals with few additives. Colors and artificial sweeteners and flavors are the worst for sulfite triggers. I have a couple of other things that set me off - sunflower seeds (true oropharyngeal allergy) and albuterol - worse than sulfite.
|Posted By : mikemac - 2/15/2012 5:50 PM|
|dear Alcie, drs refer to our condition as an allergy becasue of the histamine triggered when exposed to sulfites,.wheezing in the chest,hard to get your breathe, wonder how much the drs knows about it,or just not taking the time to explain because its complicated and lenghtly, so i get that completely. but its much more then a histamine issue. life threatneing to me,. also anyone with sulfite sensitivity can turn deadly as mine has. i been suffering since i was born,and i always ate very healthy,but never organic. organic,gluten free elimated most of all my suffering. but the problem doesnt ever get fixed or go away,my next meal is always a gamble to send me back into anaphylaxis shock,besides being life threatning ,it isnt a pretty picture, total neurologic breakdown, completely loss myself and the ability to compose myself. total space out. if my wife wasnt with me toexplain they would just think i was wacked out on drugs which is absolutely not the case,wish there was a drug out there i could take to help but,thats not an option. im the real deal. SULFITE OXIDASE DEFICIENCY, less then 50 reported cases in the world. i have a dr of generics with 53 years experience documenting my case.obviously he wants to have this under his belt and im just happy to find a dr who can put some light on this. the convential drs ive seen just think im nuts,wish that was the case i would probably live alot longer,lol. no worries i have a great sense of humor its one of the few things i didnt have to give up.. also hes completely shocked by the overwhelming data i was able to put together on my own over the years of all the misdiagnoses,lots and lots of miss diagnoses,and lots of meds i should have nnever been given if the drs new better. but iim not mad at them it was explained to me that medical school in the usa dont teach about this condition,so you would have to find a dr who has taken it upon him or herself to read into it with an open mind.alot of it goes against what they actually been taught,so they will just turn a shouylder,so rare for them to get a case its not worth there time to study the extensive material as i have with very little dollar return for them. my dr russel cancellari in southhampton new york,said from his extensive studies on sulfite oxidase deficiency is that he believes that it not so rare at all. he said they just dont know what signs to lok for or how to identify it. i know what signs to look for and even the array of blood and urine test to help put the pieces of the puzzle together. no one test or magic bullet. also the cofactors,other deficiencies associated with the condition,such as molybdenum,b12, vitamind,b1,and tetrahydofolate,and p5p-vitamin.|
|Posted By : mikemac - 2/17/2012 7:09 PM|
|alcie- so many issues you mentioned i sufferes as well until i changed to organic, i had all kinds of ibs, SPATIC COLON, DIVERTICULITUS, SOME BLEEDING AND CONSTIPATION, HEMEROIDS, TWISTED INTESTINE, ACID REFLUX,BLOATING,. also with sulfite sensitivity you definetely cant have gelatin!! i just found out about that last week the hard way and read into it. yep cant touch yogarts made with gelatin. body cant process and theres a 18 hour delay on the issues associated with sulfite sensitivty and gelatin .|
|Posted By : mikemac - 2/17/2012 7:16 PM|
|alcie is your food and beverages you consume all organic usda approved? no matter how good i ate before i continued to have all my issues,then the switch to organic changed everything within just 3 days i felt a huge difference. no matter how you look at the sulfite sensitivity ,i see it as a processing problem,. so conventional foods grown with all the enhancers, pesticides, and then sprayed with sulfite rite after harvest to prevent browning,all add more toxic chemicals that the body cant process properly and just adds a huge tax on the body ,. an appel is not just an apple when comparing conventional to organic . and the purer the food you eat the more that pure food will help to deal with the accidentail sulfites and sulfur we get when we consume.especially when you eat out or order in..|
|Posted By : Alcie - 2/17/2012 9:11 PM|
I don't eat organic, just minimally processed. I don't have sensitivities to fruits and vegetables, but am picky about where they are grown and wash everything. I'm OK with Activia yogurt in moderation. I can have 1 slice of some brands of pizza if I stay away from sodas and other processed foods that day.
I don't have IBS, at least never diagnosed. I get constipation from pain meds, bloating from "gassy" foods.
My reflux is only heaving since I had to have surgery on the stomach. Previously I didn't have acid because I was taking Nexium, but the stomach reacted with refluxing up its contents almost only in response to sulfited foods, proving to me at least, that reflux is not cured by antacids.
My worst problems are additives like sweeteners, colors and flavors. I do most of my own cooking, even took my own food with me when I had the stomach surgery.
You may have intolerances to things that don't affect me, or a worse sensitivity to sulfite. The latter seems to have degrees of intolerance. Mine is not nearly so bad as Rick's.
My point is don't think you have all the answers, not ever. You will continue to find new foods you don't tolerate, and may develop new sensitivities, and sensitivities can become "true" allergies. Keep a good journal so you can go back and review foods you have eaten in the past and figure out what ingredient is responsible or hopefully, you do tolerate something you suspected previously.
|Posted By : mikemac - 2/18/2012 8:19 AM|
|alcie conventional foods farmed with toxic chemicals just kills me, i cant process all the chemicals like miracle grows and nitrates that the food sucks up from the toxic soil,. so my processing problem wont allow for toxic chemicals which is in all conventional foods,.all conventional foods make me sick, i did the journal for 20 years ,didnt matter what i ate, if it was conventional toxic grown it made me sick. all organicf foods i can tolerate nicely with no issues at all,. also gluten is a bad bacteria. gluten is the same in all the wheat barely s and rye,. its complete cross contamination,these crops are just feet from eachother,so i dont believe there are different gluten bateria,its all the same and they share the croos contamination,lie the oats they farm along side the wheat barely and rye. its worth looking into organic foods,why ingect toxic chemicals, thats your choice. or you may want to read into chemical toxic free organic foods.. was the best tratment for people who have processing isuues,it put the least amount of tax on the body and i need all the help i can get. organics is the future ,over the next 10 years i belive everybody whos educated on it will switch over,. also the food manufacturers were already warned that if they continue to farm with the toxic chemicals that they now know can give you cancers and other severe illnesses that its no far off from what happened to the tobacco company years ago with the big lawsuit they had for poisioning people. yep these are facts im sharing not opinion. conventional means toxic,. organic means not toxic . i dont any gas with organic foods,zero . acid reflux that i had was my body secreting acids to help process the toxins,once i removed the toxins fro my diet acid reflux is completely gone. sulfite oxidase deficiency is not an allergy at all, thats laymans terms . there is an allergic reaction that secrets histamine,but not an allergy at all. the proper dr who knows about this could explain more properly,but if the drs says its an allergy i would run to a new dr because hes very wrong to say that. allergys dont kill you ,and give you great deficiencies in the body. complecated yes. let me try to say like this,. sulfite sensitivity is an accumaltive problem,you can process properly so these toxins accumalate in the organs and tissues of the body, in time the reason why sensitivty can go from problems to life threatning is becasue of the accumalation problem . as these toxic accumalte in time,there comes a point at which the body cant store any more toxins and the next toxic sulfite otr sulfur that you ingest the body cant store,it becomes saturated and as a self defense mechanism it shuts down,ex going into shock. so best not to eat conventioan toxins and accumalte these sulfites as the wreck havoc on your body and mind,. so its an accumaltive problem from the lack of processing,. no allergy out there has an accumaltive problem,that what sets my condition from a common allergy, where you were exposed to something they gave you a reaction but nothing to do with your past, sufite problems has everything to do with the past because you accumalte and the body in time gets saturated and shuts down ..|
|Posted By : mikemac - 2/18/2012 8:27 AM|
|alcie as scary as this may sound, i cant find a dr out there that knows more then me on the subject, not even close.. i met the number dr out there who did the extensive study on this for many years,renownded for his work, and ive taught him alot,like he said i taken upon myself to read all material out there available on the subject,but as he said with envy ,that becasue i live with the conditioneveryday,with everymeal thatit makes complete sense that i would know more living and studying the condition then any dr who reads into it.. hes copied much of my work and has priased me for it. ( living with sulfite oxidase defiiency) i also have a twitter page. called living with sulfite oxidase deficiency.. i challenge any dr out there to go head to head with me on the subject of what i study everydayand live with til the day i die. anyone up for the pepsi challenge, would be entertaining.|
|Posted By : mikemac - 2/18/2012 8:34 AM|
|not to mention all the labratory test that i run on myself to foloow my process,most drs are not even aware of the tests that i run, and they will all tell you there is no treatment,wrong again,there is not cure at the time,but treatment is balancing out the imbalances causes my the dulfite oxidase deficiency,and it works amazingly,its night and day compared if i stop the balancing the imbalnces. but insurances wont cover for this, and if they cant charge your insurence they will say theres no treatment when im living proof of that. .my dr would confirm my amazing results. i will live much better and longer with the treatments...|
|Posted By : mikemac - 2/18/2012 8:41 AM|
|alcie, at anypoint sulfite sensitivty can become deadly,at that point the body has become saturated. its according to your intake of sulfites,and how bad your procesing is that at what point your body is saturated that it becomes life threatening..i have found lots of ways to treat this.and the tests that i run show that there is ways to pull out the sulfite and sulfur from the tissues of your body,but you would need holistic treatment to do this,its not reconized by conventional dr who treat the side affects. something im documenting now and hope to share with others soon,but not ready to share , i want it documented so i may be credited for my extensive work and study on the subject ,.|
|Posted By : mikemac - 2/18/2012 8:56 AM|
|alcie ,40 years of misdiagnoses by top drs who never made any sense had forced me to become my own dr. i found the problem myself few years ago, its took time for me the find the usa leading specialsit on the subject, dr rusel cancelari of southampton new york to confirm me finding with my overwhelming evident of my sulfite oxidae deficiency,. weve even gone down the roa of gene testing,which gets bit more complicated,.but it is an inherited condition, and again dr russel cancelari believes my condition is not rare at all just rare to diagnos because the dr are clueless and not taught what signs to look for, never mind what tests that should be done to piece the puzzle together..if they new what to look for they would see its not rare at all. so i am a rare lucky one to find my problem myself,thats very rae,and actually im the only one i know who identified the sulfite oxidase deficiency,.and i can surely help others which ive had, buttheres always the same problem, they run back tothere drs to discuss what theyve found and its the same drs who misdiagnosed them to begin with becasue they are clueless on the subject, not to knock the drs, but they dont teach onj the subject in medcial school in the usa,. if you want to help you will have to help yourself as i have. any drs out there who like to go head to head with me im ready for someone teach me new on the subject, but i been through this already,they learn much more from me then i can from them. ive read it all and live with it everyday..|
|Posted By : Alcie - 2/18/2012 6:41 PM|
|There are nearly 200 gluten types. A tiny part of an article I just read gives you an idea why it's so hard to know what our problem is:|
"Classification of gluten proteins. Celiac disease and gluten sensitivity patients react to the toxic peptides produced by members of the Triticeae tribe, including the grains of wheat, barley and rye. Some patients also react to the prolamins in oats.
Prolamins derive their name form their high proline and glutamine content that is resistant to proteolysis during digestion. The major prolamins in wheat are gliadins and glutenins.
Gliadins in wheat flour are further subdivided into α, β, γ and omega-gliadins (and peptides released from α-gliadins). Peptides from α-gliadin induce the greatest immune response (T-cell stimulatory response), which may lead to the development of celiac disease in genetically predisposed individuals. α-gliadin toxicity, and the resulting destructive cascade of immune reactions possibly leading to small intestinal villi damage, is largely mediated by a single glutamine in a single peptide. Colgrave et al. explain that partially hydrolyzed peptides cross the epithelium and gain access to the lamina propria by an unknown mechanism where tissue transglutaminase deaminates the glutamine amino acid that stimulates the immune response. Mutation of this glutamine to lysine, for example, abolishes the celiac toxicity of α-gliadin.
The α-gliadins are a gene family encoded by the Gli-2, Gli-A2, Gli-B2 and Gli-D2 loci located on the short arms of three homologous chromosomes (6AS, 6BS and 6DS) of hexaploid bread wheat (Triticum aestivum L.). Each of these loci may contain from 25 to 35, or even 150 α-gliadin genes per haploid genome.
Different species of wheat differ in their number of chromosomes: diploid (two sets of chromosomes, 2N), tetraploid (four sets, 4N) and hexaploid (six sets, 6N). High protein content is associated with an increased proportion of gliadins, including the α-gliadins, while strength is associated with selecting the most appropriate combinations of glutenin alleles. Higher ploidy (more chromosomes) wheats may contain more gluten proteins."
"Modified Starches The food industry also alters the chemical structure of starches to create a variety of functions in processed foods. Despite a review suggesting that modified food starches are 'safe', other researchers document a few cases (four out of 21) of increased breath hydrogen, loose stools and/or nonspecific diarrhea associated with modified food starches used in some baby foods. Do these starches cause gastrointestinal symptoms and possibly increased inflammation in a small percentage of the population? If so, their susceptible intestines are vulnerable to altered food products, and their clinicians are left wondering what is causing their symptoms."
I'm sorry the article is in a password needed site. If I find it elsewhere I'll post a link. I wanted to give you an idea how complex this subject is.
|Posted By : marry the night - 2/18/2012 7:56 PM|
|I know that the yolk and whites contain sulfur. Do boiled egg whites contain natural sulfites? I know that the yolk contains them in addition to sulfur, and I am pretty sure that the white does not. Undercooked egg white make me sick (histamine intolerance issue). However overcooked whites make me sick also. hydrogen sulfide maybe? I think that hydrogen sulfide increases when an egg is overcooked.|
|Posted By : Alcie - 2/18/2012 8:27 PM|
|Welcome to the forum marry.|
You might just be intolerant to proteins in eggs, but sulfites are in cooked yolks, not so much in the whites. I'd ask a really good allergist to skin test. One of the suggestions in Rick's online book (see link above) about sulfites, at one time, was eating raw (pasteurized) egg whites. I tried it, didn't notice a difference in my sulfite intolerance in a few days, didn't like raw egg whites, gave up, maybe too easily.
True histamine (IgE mediated) allergy can be dangerous to be testing without an allergist. If you have throat or heart issues I hope you will do all testing with your allergist. I've been in the ER a few times when I couldn't get my heart rate (my major symptom) under control.
|Posted By : marry the night - 2/18/2012 8:34 PM|
|thanks. My main protein source right now is boiled egg whites. The amines in meat I am so sensitive to. I can't eat yolks (sulfites). I am currently seeing doctors about this. I have pseudo-allergies and such. I hard boil my eggs and throw away the yolk, and probably over cooked them being paranoid of undercooked eggs (histamine intolerance). I never hear anyone complain about sulfites in egg whites. I was just checkin. thank you. I have never heard of anyone having sulfite reactions to boiled egg whites.|
Post Edited (marry the night) : 2/18/2012 6:41:33 PM (GMT-7)
|Posted By : marry the night - 2/26/2012 9:55 AM|
|Do vegetable oils, e.g., canola and soy, contain any added or natural sulfites? I don't think that they have any natural sulfites (never heard anyone complain about it) but wanted someone else's viewpoint.|
|Posted By : Alcie - 2/28/2012 8:36 AM|
I think egg whites may have a very small amount of sulfite. Cooking is part of the problem. It allows sulfur in the egg to be oxygenated into sulfite. Rick's free online book is lots more informative. http://www.learningtarget.com/nosulfites/index.htm
There's a discussion of eggs in the book.
Oils don't seem to have sulfite, according to the tables in Rick's printed book.
|Posted By : Janey P - 3/13/2012 10:33 AM|
|Hi - Im so so so glad I came across this site. I live in the UK - and sulphite sensitivity/allergy is almost unheard of or unrecognized. Im really really in the midst of a truly bad reaction. Having figured out myself about 4 years ago that I had a sulphite sensitivity - i reacted really badly to alcohol - awful hives - all over my chest/face. Went to my doctors - he disregarded it - in the UK we never get sent to allergists or dermatologists - and to pay privately cost an enourmous amount of money - and still we are so far behind the States when it comes to allergies. So for four years i've been floudering around in the dark - having reactions to all sorts of things and being incredibly uneducated about ingredients/labelling etc. My worst ever reaction is right now - hives all over my body - particularly my face and chest - I look like i've been burnt - ive been to docs - again he dismisses me from his surgery - even though my blood test showed I had high IgE levels in my blood - is this related - does it mean i have a sensitivity to sulphites or an allergy? I dont get anyof the gastro problems/breathing issues - just incredibly bad hives which start on my neck/throat and spread to my face. Its ruining my live - until I read this thread i knew nothing. Ive been eating all the wrong things - and even taking 5g of Biotin daily for last 6 weeks which I believe has triggered this massive reaction. Doctor won't listne to me - im just trying to figure it out myself. Im trying to improve my diet - BUT my biggest challenge is shampoo/washing lotions etc. EVERY shampoo even aubrey organics is triggering a reaction - im literally on fire in the shower. By powers of deduction i've also realised that whilst I react to anything with sulphites (shampoos have SLS dont they so this would account for that) even if i buy a SLS free shampoo - i react badly - i believe this is to the coconut derived ingredient. Can anyone pls pls pls help - ive considered using baking powder and apple cider vinegar as an alternative - am I going to make matters worse? I literally can't function at the moment - the itch and the burn is immense - im desperate. I've started taking b12 vitamins - have been assured they are sulphite free - but i dont want to do what I did with the biotin. In the UK we are so many years behind all this reasearch - i havent met a single person with the same problems.its destroyed my social life and now my working life. Any help would be so gratefully received - thank you for reading ps i happened upon rick's site - amazing info as well
|Posted By : Alcie - 3/14/2012 7:03 PM|
|Hi Janey, so glad you found the forum. It's too bad you can't get the specialist you need. I can't imagine the doctor not at least sending you to a hematologist (oncologist here). Were not doctors, only patients, so don't take anything here for medical advice. We only know what's worked for us.|
Look again at Rick's book. On the links page you can find House Mouse's link. She had a nearly lethal problem with detergents, shampoos and skin products. I have to double rinse all my laundry and only use "free and clear" detergents. I avoid fabric softeners, use only the "free and clear" ones. I use hypo-allergenic shampoo and facial soaps, usually Neutrogena brand.
Run away from apple cider vinegar! It's loaded with sulfite. Rice vinegar is OK. If you don't have a gastric reflux problem, why are you using this?
You may find your specific triggers if you keep a really good food journal. Write in it the time, everything you eat or drink, your medicines, what detergents, soaps and shampoos you use and your reactions. With hives, your reaction could be something you ate or used the day before. Migraine sufferers can have a reaction 2 days later.
You may find your problem is not sulfite at all, or you may find you have more than one trigger.
Was the "alcohol" wine or beer or in a citrus mixer? That could point to sulfite.
|Posted By : Janey P - 3/15/2012 7:47 AM|
|Hi Alcie - thank you so much for responding - ive read allof your threads with much interest. I appreciate your opinions. Today im in a worst state than ever - yesterday had awful headache and sickness - today im in completely covered in hives. The reason I think I may be sulphite sensitive is because mainly of the alcohol problem - the rash redness across my face and chest typically appears 24 hours after consumption of any type of alcohol - or cold beverage - so I dont drink any carbonated drinks/fruit juices etc - i even react if I drink carbonated water - eyes swell etc - but not straight away always around 24 hours later - which makes it really difficult to pinpoint the culprit. I would also react if I consumed any candy products such as Wine gums that contain sulphites - in last four years its mainly been a rash/swelling of eyelids etc - but if I look back ive suffered with terrible headaches/nausea - and a bad bout of dizziness which last on and off for 7 months - i never really kept a food diary - but have started one now. My hair is also in really bad condition and I started the biotin 6 weeks ago to help with that - i believe the biotin together with not really understanding the problem is what has caused this massive reaciton that im currently suffering with. Also i think I have a coconut sensitivity - any costmetic products at the moment flare my skin - and the one ingredient I have identified in almost all cosmetics is coconut is used in some form. I was going to try apple cider vinegar to rinse my hair instead of using traditional conditioner - so thank youfor the heads up on that. I think ive always reacted to alcohol when I was younger but the symptoms werent so severe. Im 37 now and four years ago I made the silly decision of highlighting my hair very very blonde- this conincided with all my allergies developing and over time they have got worse - do you think that overloading my hair with dye could make my sensitivity worse? Also have you heard of leaky gut and some assocations with sulphite sensitivity - ive read that some sulphite sensitive individuals might have candida or leaky gut -which can enhance their problems - or even be the cause because they aren't able to process the sulphites corrently due to leaky gut or candida? And sorry this thread is so long -but one more question if you or anyone knows - ive read that epsom baths are good for sulphite allergies - the body absorbs the epsom which aids with magnesium and helps to convert sulphites - has anyone else read this - for reference google Margaret Moss - UK Allergy clinic dietician - thanks so much for replying - it has really lifted my spirits|
|Posted By : Janey P - 3/15/2012 7:55 AM|
|Just wanted to send this link - Margaret Moss Uk dietician and some of her theories about sulphite sensitivity |
|Posted By : Alcie - 3/15/2012 8:50 AM|
|Here's that link made clickable http://www.foodsmatter.com/allergy_intolerance/sulphites/articles/sulphates_sulphites.html
If you hit the box that says post reply instead of the quick reply box, the links become clickable and you can change fonts, colors, etc.
I found the website interesting, but I didn't find any credentials other than dietitian. And her recipes saying add onlin, garlic, leeks is just wrong! Those veggies contain lots of sulfite! I love them, but they make me sick. See provenance in Rick's book. He researches, measures and calculates this stuff. Nevertheless, I will read more of the website because it's got good points too. I always want verification before I swallow anyones theories.
Again, there is no sulfite in pure alcohol, so were you drinking wine or beer, or was there a citrus mixer involved in your reaction? Those drinks would have sulfite, and you could calculate from the amount you drank what your level of reactivity is. Of course you would have to add in any sulfite from food you ate, and your allergy could still be caused by something different. I get hives from the antibiotic Avelox, and get allergy symptoms from sunflower seeds.
|Posted By : Janey P - 3/15/2012 9:55 AM|
Thanks for the tips alcie - really appreciate your lead on these things - im very new to forums - so any help is appreciated!
Yes - I also thought some of what Margaret said conflicted with other things I had read. I have just actually spoken to her on the phone - and im only halved convinced I should make an appt withher -I dont want to make anything worse or pay for advice that I could basically find out for myself. Because im not getting anywhere with my doctor im just so desperate for help or advice. My experience with alcohol - Wine - always have a reaction 24 hours after consumption - eyes swell/neck/face hives, the same with beer. I dont tend to drink vodka/gin etc - but if i do have a night out and just drink fruit juice on its own - an orange j20 - next day ihave the same reaction. When I completely cut out alcohol my symptoms got so much better - but this is the strange thing - my skin is worst now than it has ever been. And last year I did have wine/beer on a few occasions and didnt react. In my mind I thought because id detoxed from alcohol this is why i wasnt reacting. I had 2 glasses of beer on New Years Eve - and 24 hours later had a reaction - but the reaction hasn't disappeard since then - only gotten worse. Maybe my connection with alcohol has been a red herring. It was only through this connection that led me to believe the only thing i could be sensitive to in alcohol is sulphite. In the UK nearly all wine carries a sulphite warning. My diet at the moment is very very limited - have cut out sugar, cut down on wheat & dairy but havent completely eliminated. I've been eating crackers/celery/apples/chicken/banann's/few eggs/some bread/decaffinated coffee and when im really strugglign with my sugar i do have some chocolate - i know this a no go for sulphite sensitive people. Do you think its possible that people with a very mild sensitivity can consume some sulphite foods regularly but eventually levels build in their system and then they have a reaction? Do you know of anything else in alcohol that can cause a reaction other than sulphites? Do you buy into the Epsom salt theory or have you heard about this before? apologies for rambling on and asking so many questions, and thanks again for your responses
|Posted By : Alcie - 3/15/2012 1:47 PM|
|Janey, if you make your bread yourself it should be safe, but I react to all store bread unless it's labeled "preservative free." Plain crackers - look at the labels and avoid those with lots of additives. Cutting out bread works well for losing weight, if you happen to need that. Cane sugar is fairly safe, but beet sugar, which is cheaper, has sulfite from bleaching the sugar beets. I don't know what's in an orange j20. Lemon and lime juices are highly sulfited, over 100 ppm. Eggs have natural sulfur. Eat them in moderation, and note reactions! |
I've read that lamb and rice are the least likely to be allergenic, and an elimination diet starting with only these was recommended to me by my allergist. (Start with these for 2 weeks, then add one food every few days, depending on how long it takes to start the reaction. My reaction is usually within minutes to a couple hours.)
Since you seem to have a "true allergy" which is severe, be careful if you get to challenge testing. I wish you had a doctor, preferably an allergist, to help you.
It's possible, even likely to have an allergy or sensitivity to wheat. New allergies can start at any time. Celiac disease, where the patient doesn't tolerate any gluten can crop up any time too. I don't have a true allergy to wheat but I've gotten somewhat sensitive to it. Getting the preservative-free bread and repackaging it into 4-slice packets and freezing it helps me not eat so much, but it's available for my husband to make toast or a sandwich for himself.
Thanks for the link. It's interesting, but I wouldn't spend money with any of these people until you've read a lot more and done a lot of journaling to make sure of your sensitivities. I'm leery of "leaky gut." I have only heard of it from alternative medical providers. I worry it may be just the fad du jour, until I see an actual study done by qualified researchers. The same goes for yeast/candida. While you could have a problem with yeast if you take a lot of antibiotics, I don't see any reproducible research confirming it has such widespread pathogenesis as some claim. But then I don't follow much in the way of herbal medicine either.
|Posted By : Eweieie - 3/15/2012 2:24 PM|
|Hello, I have just found this site and am encouraged and hope I can help others. I have a life-threatening intolerance to all sulfites and can identify with your challenges. I was incorrectly given Thyroid meds many years ago which did not correct the problem. To keep my first reply short I also have hard swelling on any part of my body. I could go up 5 dresses sizes at a meal, finding it hard to walk etc. The pain in my chest and back was frightening. What was happening was that the soft tissue and muscles were being stretched to their max. My face was distorted with my lips swollen to my nose and my tongue hanging outside my mouth and my gums extended with my neck completely filled in from chin to base.|
Painful. All my present Dr. could say was, "Youv'e been swelling up since I've known you." I have come to know a lot of info through intense study,and my Dr. has now depended on my research to offer help. Thyroid Med - put together with sulfites, all shelf meds contain sulfites, thank goodness I don"t require any. Yes, shampoos, toothpaste, most bottled water, soaps, creams, Epinephrine - sulfites, it's scary when you have to plead with hospitals, finally receiving an apology. No antihystamines, benydryl, etc. all put together with sulfites. I now take pure thyroid in capsule form, take it apart and put contents in whole milk (no sulfites in whole milk, only, so far.) This Sulfite Allergy is far more prevelent in new borns to elderly than the FDA and Pharmecutical would like us to know. IT IS A DEADLY PRESERVATIVE TO GIVE PRODUCTS A LONGER SHELF LIFE. Every person has a type of reaction from mild to wild. IT IS A MONEY MAKER, by their own admission. THERE IS NO ANTIDOTE, WORLDWIDE. Are we willing to take a stand against this? My heart goes out to you all.
|Posted By : Alcie - 3/15/2012 2:56 PM|
|Eweieie, welcome to the forum.|
I feel sorry for you having such an extreme reaction. I can't imagine what that feels like. I am lucky to only have the sensitivity, although I get tachycardia and have had to have chemical cardioversion for it. (stops the heart for a few seconds, hopefully heart resets itself)
Thanks for the note on thyroid meds. I was put on a couple of different types in the past and didn't tolerate them, thought it was the thyroid med. That was before I found out my sulfite intolerance. Since I don't need it now, I haven't thought back to that intolerance.
Some other people who get the "true allergic reaction cet relief with antihistamine tablets, not liquids or liquigels. At least these don't have an apprecible amount of sulfite. I use tablet Benadryl and Alavert with no problems.
I hope you have found Ricks No Sulfites website (link is a few posts up) with the book explaining how these chemicals got into our foods, what names they hide under.
|Posted By : Janey P - 3/16/2012 10:26 AM|
|Hi Alcie - again thank you for your advice. Im off work today - had really bad night my skin is beyond its worst - no other symptoms just hives from head down. Been to my doctor again this morning -she understands nothing off my concerns about food sensitivities - said it was unlikely because I dont have immediate reactions. She gave me more steroid creams and diazapam! i dont need tranquilisers I need medical assistance! Im waiting to see a dermatologist and have been told I should hear by May - but they wont do any food sensitivity testing. You get very bland medical assistance in the UK. I really am beating my head against a brick wall. She acknowledged I appeared to be having an allergic reaction 'to something' - im at a complete loss. Im going to start a proper elimination diet today - going to try lamb and rice - do you know of any 'safe' vegetables - or are all ok? I dont need to lose weight - im if anything very underweight - have lost 7lbs in last 2 weeks - im just under 51kg (8 stone) and food is becoming the enemy. I've stopped my b12 supplements (cant trust what is in them) along with my antihistamine - was taking fexofenodine telfast 180mg - but everything is making it worse! I appreciate your views on the links I posted - you make a lot of sense and are clearly very well educated about your sensitivities. I think I have alot more reading to do! Thank you again for your feedback.|
|Posted By : Alcie - 3/16/2012 11:15 AM|
Diazepam is a tranquilizer only in higher doses. At 1 or 2 mg it is a terrific muscle relaxant. So sorry your primary? doc doesn't know about food sensitivities. You are right; they can cause late reactions. Skin reactions take a while to pop out. Rick points out that migraines can occur 2 days later. I had a serious reaction to albuterol 6-8 hours after inhaler use.
I think you are right in trying to solve the problem yourself. I had to. My allergist helped me with the idea of the food journal and directions for doing a food challenge, but I went in with a suspicion of sulfite. I had made wine in the past, had drunk it with no reaction, then sulfited a batch and reacted strongly. That was a pretty big clue, and my allergist agreed.
Safe vegetables, hmmm. It's going to be pretty boring eating, but it's worth it to get rid of the rashes. Rice is supposed to be safe unless you are asian and have eaten it a lot. Allergy to rice is known in Asia. Pears are supposed to be safe. I think you might be OK with a week on those three, then add one vegetable every 3 days or more. Longer time is better for you with the delayed reaction. You might try potato, but fresh baked only. Then maybe green beans or peas, sweet potato - choose all foods that are listed as low in sulfite to start - avoid onion family. No seasonings except salt. Pepper is sulfited in the roasting of the peppercorns.
I did a brief internet search for allergy-free foods, but mostly came up with ads for selling you foods - all of which would have sulfites. Maybe you can search for some good sites and post ones that aren't selling stuff.
Also try to find some safe skin products, avoiding as much as you can and rinse, rinse, rinse your skin, hair and laundry. You don't have well water with iron, do you? There is often sulfur in coal beds. This is going to be important since you have a skin reaction.
I worked as an ICU technician, but that was way back before kids - 40 years ago. I worked as a pharmacutical company technician before that. At least I have a science education so I can read the easy stuff.
I have no experience with actually doing an elimination diet, just making guesses. I had a clue because of my immediate reaction, so I just kept a journal and avoided high sulfite foods.
My allergist has me trying tobuild up tolerance to cashews and sunflower seeds. I eat 1/2 cashew and a nibble of a sunflower seed daily. In a couple of weeks I will start raising the dose until I get to a tolerance (hopefully) for a moderate serving.
Definitely keep us informed as to your progress! Your results will help others.
|Posted By : Janey P - 3/16/2012 12:58 PM|
|Alcie, again thank you for your guidance. I've just been to the supermarket - dinner is lamb& rice with a pear to follow! I really do appreciate the time you have taken in your considered responses. On this avoidance diet do I keep to these 3 things for all meals? I read on Rick's site that some oatmeal is ok for breakfast, shredded wheat and all bran - but for the purpose of the diet do I need to just eat the 3 foods mentioned lamb/rice/pears? I am really going to struggle i think - but it will be worth it get some relief. I did read some of Rick's online book - but being a complete novice some of the techi stuff went over my head a little. I see you have a better understanding with your employment history and training. And you have clearly learned a lot along the way. Out of interest are you able to drink your own homemade wine now - or would you still react? I know grapes have high sulphite content. And over the years has your sensitivity become worse - or do you think you get to a point when you 'plateau' and it stays stable? Literally 3 months ago I was able to eat a much more varied diet with no reaction - apart from the fruit juices/alcohol etc - I just dont understand what has changed so much in 3 months. I'll keep you updated with the diet. I also read housemouses' site - and a lot of what she said made sense as well - I see she has had some very encouraging results with B complex supplements and organic carrot juice. I am already using the Aubrey Organics hair care range - but still reacting to the shampoo - I take a small sample of shampoo but it in a cup and water it down - I have less of a reaction doing it that way. For people who are reacting to shampoo - don't just consider the SLS's - the coconut derived ingredients in ALMOST ALL soaps/shampoos can be another problem - they take out the SLS's but replace with cocamidopropyl betaine - another nasty. |
Did you have any thoughts at all on the Epsom salt baths? Thanks again for you advice
|Posted By : hazyshades - 3/16/2012 9:11 PM|
|Hi I'd just like to introduce myself, I've never participated in an online forum before as prefer to come to spots like these for information and ideas.
My name is Hazel, I live in Melbourne Australia.
I've joined because in my own community of friends and family (and medical practitioners etc) seem to have a very limited understanding of anything to do with sulphites, and I'm looking for a place to ask questions.
Alcie you seem to be particularly well informed on all things sulphite related!
My own journey started 10 years ago when I was on a trip to Thailand. Prior to this trip I was able to eat anything with impunity, I wonder if I picked up some kind of bacteria over there which started things.
My sensitivity has increased over the time, with increasing responses to foods. My responses are at this stage all entirely gastrointestinal (foul hydrogen sulphide burping, bloating, vomiting and diaorrhea). I count myself very fortunate that my reaction is so mild compared to many of you on this forum - for those of you with serious allergies, I can only convey my sympathy, and join you in the necessary lobbying to have food, medications and cosmetic type products labelled appropriately.
A question I have is, if any of you are local to Melbourne, are there any gastrointestinal specialists around which are particularly good at understanding food intolerances? I have a referral to see a guy in Frankston, but with a toddler and a baby due in a week I don't have time (or money!) to mess around with specialists who really don't understand this issue.
Many thanks to all the members who have contributed to this forum so far, I have enjoyed reading your posts and coming to grips with my own issues using your experiences.
Hope you all have a lovely weekend
|Posted By : wisewymn - 3/17/2012 5:41 PM|
|I am allergic to sulfates, mostly in wine so my intake of wine is minimal,but if I do indulge it gives me a migraine so I stay away. I usually look at the ingredients of food, but do not eat processed food if I can help it. I try to eat a healthy diet as much as possible, organic when I can afford it. I have done several Detox sessions which helps a lot when I am feeling sluggish. I take meds for breathing problems, Asthma and when I am on steroids I do a detox after a taking them since I get thrush and yeast infections. Listening to my body and taking supplements and homeopathic remedies helps me quite a bit. I have depression with anxiety and panic attacks and so a new regime puts my body in a stressful status. I'm allergic to cats, and had to give back my 1 yr. old back to the Humane Society, I've had cats before but I suppose these allergic reactions can get worse over time and age. I read as much as possible about side affects of medications and I am on and make sure that I am in control over my health care with the help of my Health Care Provider. I think the more we are aware and are being proactive about our bodies and not allow the Medical people to decide what we need. Of course in emergency situations I am compliant, (to a point). Don't know if what I have written is of any help. Ria|
|Posted By : sals - 3/18/2012 1:26 AM|
I have just read your post although an old date, but thought I would try to comment to you.
I have all the symptoms you have, weired though they are: The most weired is the left arm numbness and the collapse, palpitations, - but everything you have.... so do I.
You are not alone, I also belong to the Salicylate Sensitivity link. which does help a bit.
But none of them have had the same symptoms as you and I share. The left arm thing is really scary. Yes I end up in hospital, NO they find nothing wrong.......... this has been going on years.
I have switched to organic foods, this does help a lot, but the amount of foods that contain sulphites is now amazing, mainly "processed" supermarket stuff.
If I even eat anything with sulphite in.... say a pork pie from a local butchers.... I will lie awake all night and not be able to sleep. Of course these will also contain preservatives aka... sulphites.
Supermarkets love these, it keeps their food "fresh" for a very, very long time. I use the term "fresh" very loosely here
WHAT it really means is it dosn't encourage bacteria (which won't go near sulphites) but the nutritional content of that food will deteriorate just the same.
Hope you read this......... only just found this site. Good luck.
|Posted By : sals - 3/18/2012 1:39 AM|
Just wanted to add my other probs.
doctors medications &
any food that is red/orange (weird)
*Moulds in any form.
Anything not fresh. i.e. biscuits that have gone soft.
|Posted By : sals - 3/18/2012 3:26 AM|
|To yash888. And everyone.|
Google: The Sulphite Connection link. and scroll down to the 10 news video.
You will learn all there is to learn from that in my opinion.
GO ORGANIC. normal natural sulphites will not harm you long term, added ones are the overload. Thus depleting magnesium etc.
|Posted By : Alcie - 3/18/2012 7:49 PM|
|Janey - I do drink a tiny glass of my own wine once or twice a week. I have to be careful still, because grape juice is naturally sulfited. It's a treat for avoiding processed foods. But I don't have the "allergy," only the "sensitivity." Your reaction strongly suggests an allergy.
When you get through a week of a very limited diet with no problem, then start adding new, safe foods. Yes, pick them from Rick's list. The object is to get rid of your reactions, then figure out what you can eat or use without bringing them back. First thing is to confirm that all your trigger foods contain sulfites. You may come up with other things also. That's where the internet comes in handy. When you have a list of foods you type a few of them in with the term "food allergy," and links will probably pop up.
sals. - Welcome to the forum. Sorry about the salicylate sensitivity.
Sorry also about your palpitations. Does your heart beat very fast also? That's one of my reactions. It's called "linked angina" or "cardio-esophageal reflex." I sometimes get left arm pain when I have a particularly bad reaction. I've had to cardioversion once, came close some other times. I hope you will continue to have your heart checked. These cardiac symptoms can trigger a heart attack.
I agree that walking past the deli is a good idea. Actually there are plenty of "natural" foods that are loaded with sulfite (sulphite). The onion family, pork and beef for a start. I get sick from eating any of them. As for colors, I have to avoid artificailly colored foods, but ripe red tomatoes are fine. Carrot juice may even be good for sulfite intolerance, but I haven't tried it. See the link to housemouse above. Potatoes that are processed are sulfited to prevent browning, but fresh potatoes are clean. Is there a connection between salicilates and colored foods? Double sensitivity must be hard to deal with.
Ria - welcome to the forum. I hope you will find lots of information from reading all the posts on this subject. Sorry about the cat. I miss my pets, but now just feed birds and deer in the winter. We have towhees now that will probably nest in our forest. See the links above for natural ways of lowering your sensitivity. I tried the egg whites, but didn't stick with it long enough to notice any difference. I do find if I avoid sulfites I get more tolerant.
Hazel - Welcome to the forum to you too. I haven't found a gastroenterologist yet who believes in sulfite (sulphite) srnsitivity. I did find an older, experienced allergist who said she sees it all the time. She had me keep a food journal (see the search box above for details). Then when I had my food list, she had me break the foods down into ingredients and do a "challenge test" for each of them. To test for wheat I had to find a pita that didn't have a bunch of additives which was hard to do. I cut it into 16 pieces. I ate 1/2 of one piece, waited 20 minutes, no reaction, then a whole piece, waited 20 min, no reaction, then 2 pieces, then 4, then 8. I knew then that the reaction I had to bagels with all the yummy stuff like onion and seeds was not due to the wheat. With gelatin I had to use the unflavored kind with apple juice. I used tablespoon as the measure. I got sick after the 4 Tbsp level. I'd had no reaction with plain apple juice. Rick's book tells about the processing of gelatin from pig skins.
Best wishes to all, and please post your progress!
|Posted By : sals - 3/19/2012 7:46 AM|
|Hi Alcie: yes my heart reaches 120 p.m. although the hospital says this is impossible, but they have recorded that , so there !|
Yes I also get a gastro reflux issue often at the same time. It is as if my stomache is pressing on my heart and making it beat faster, but I don't really know if it is doing that. I have had my left arm feel dreadful and go all limp also. Strange feeling....
I do know that if I keep away from supermarket stuff, then it hardly happens at all !............ if I don't then I am in big trouble, the hospital wanted me to take all sorts of cardiac medication - even though my heart was fine. I did take it on one occassion,,, guess what the palpitations were worse. Sulphites in the medication ???????????????
I know that meta-bisulphite is in a lot of medication.
But havn't checked this out with cardiac stuff.
All I know is that when I am even on thyroid medication, up goes the trouble.
Any bets on??........ it's the additives that our bodies are rebelling against.
Post Edited (sals.) : 3/19/2012 6:50:10 AM (GMT-6)
|Posted By : Alcie - 3/19/2012 8:48 AM|
|sals. - Yes, just as I guessed, you fit the picture for gastroesophageal reflex. That's reflex with an E not the U as in gastric reflux. Read the papers. There has been quite a bit of scientific research into this, and your doctors probably don't know about it. Mine still don't really believe me. This is dangerous. |
I had a heart attack once from eating a bowl of cereal with dried fruit in it. The stomach started refluxing. Then the heart started racing, and bingo, I had pain down the left arm and crushing pain in the center of my chest. I ran into the house, chewed up 2 aspirin and dialed 911. I had very little elevation of heart attack markers. On angiography there was a tiny pinch in the LAD artery, which was stented, and all was good. Only a tiny amount of damage. I fit the pattern of the research I later looked up, of coronary arteries going into spasm.
I was overweight but not obese, had high cholesterol, and this builds up in the heart arteries. When the arteries spasm, a cholesterol plaque can rupture and block the artery further - bingo heart attack.
I have since lost all my overweight, stopped eating white carbs (which are turned into cholesterol by the liver) and avoid sulfites. I still have the tachy events when I am not careful enough. These were increasing in frequency, so family doc put me on a half dose of beta blocker (atenolol) to help with keeping the rhythm constant. Yes, some heart meds are perfectly safe. I've tried them all and only reacted with the known reactions, not the tachy sulfite reaction.
I keep a list of all meds I have taken to which I have had bad reactions. This included all heart meds - but I have since figured out it is mainly because the doses are too strong, not because of sulfites, which they don't have. In fact, most meds don't have sulfites unless they are liquid (hence preservatives), except the sulfa drugs. I don't have a problem with sulfa drugs, probably because I don't break off the sulfite during digestion.
I urge you to try at least a beta blocker, since your doc is recommending it. BUT - ask the doc if he will agree for you to try the smallest dose, in tablet form, then cut it in half, maybe quarters to start. Atenolol, inderal, and propranolol were the best for me. I take half the smallese atenolol daily after taking my blood pressure. If my pressure is low I can't take it or I will be on the couch with tach from the low blood pressure. I take a second half in the afternoon or evening - again if my BP is high enough. I like my little battery operated wrist BP cuff.
Don't be afraid of all medicines. Look them up before taking them (or better, before filling the prescription). Most pills do not have any appreciable sulfite. Do get medical care before your tach becomes a heart attack like mine.
|Posted By : sals - 3/20/2012 4:00 AM|
Can you give me more info: on reflux and reflex ? it's the first time I have heard of the different spelling.
My specialists says there is nothing wrong with my heart, and that it can deal with "palpitations".... but not sure if I should now take a low dose of "something".
|Posted By : Alcie - 3/20/2012 10:04 AM|
|sals. - |
Has your doc ever seen you when you were having the tachycardia? He's right, of course, about the palps, but he probably has never seen a patient who is having a reaction like this. After all, it's rare, and most times it stops before you can get to the ER.
Treatment you can do at home is chew up an aspirin (which you can't do since you are allergic to salicilates), and do Valsalva maneuvers and cough. Look up Valsalva on the net. It's easy and works at least sometimes. In fact, I find my lower gut gets irritated too and I end up in the bathroom. My PCP Rx'd some atenolol, and I take 1/2 daily when my blood pressure is high enough, but also take a whole one when I am getting an attack. It helps me.
Ask your family doctor or your cardiologist what you can take instead of aspirin to "thin" your blood when you are getting an attack, so you don't end up with a big clot. My cardiologist still doesn't quite believe me, even though I have had to go to the ER a few times when I couldn't get the heart slowed after a couple of hours. Maybe your salicilate group can come up with ideas for an anti-clot medication - but of course, talk to your doctor!
Do you have high blood pressure? That's an indication for taking at least a beta blocker. They lower blood pressure and help regulate rhythm. High cholesterol? Overweight even if not obese? These need to be taken care of, lest you have a heart attack like me.
Reflux is a term you will read on the GERD forum. It's when the stomach pushes its contents into the esophagus - heartburn.
Reflex happens because the esophagus, stomach, heart and intestines are all conected by the vagus nerve. When one is triggered the others react due to this connection.
|Posted By : sals - 3/22/2012 6:47 AM|
|Hi Alcie: Funny you should say that about "Reflex" as opposed to reflux. I used to contribute to that Gerd forum where the Vagus nerve was blamed for heart palps. Quite ligitimately and sensibily. And I have always believed the link. My old doc. that I had years ago, (the old fashioned kind) ! told me that there is a nerve going right down your left arm - and that a lot of people didn't know that. He said it affects your digestion etc. |
So when the reflex happens that is obviously the link.
No I can't take asprin, but I do take vit. E. a good blood thinner, without the side effects. I have normal bp. Yes overweight, who isn't !
No-one can see you when you have the palps. cos you are probably at home, and you call the ambulance, they find nothing wrong, they may take you to ER. but that takes about 1 hours, heart slowing down by then so no-one takes much notice and sends you home.
I have tried the coughing action and also pushing my stomache down (as if having a bowel movement) seemed to help when I did it.
So was is "Valsalva" then. ??
Once when in hospital with high heart rate (cos I had probably eaten one of their sulphite meals) a nurse sprayed "something" into my mouth. My head was just about ready to explode of my shoulders with the bad reaction I had. I went loopy, saying that she had sprayed something into my mouth I was alergic to. That's the trouble so many chemicals are used "to help" - without any investigation into whether the body can stand them.
My friends mother, went into hospital for a minor knee operation, and was in some discomfort after the op. so they gave her some morphine for the pain. Result - Heart Attack then and there in front of them !!! they later found out she was allergic to morphine. She had absolutely no former heart problems.
I know my body would probably react the same, (see the reaction I had to the mouth spray)..... bye for now.
Post Edited (sals.) : 3/22/2012 5:55:13 AM (GMT-6)
|Posted By : Traveller66 - 4/15/2012 6:37 PM|
|I just registered on here after reading a few different threads. I was diagnosed in my youth with an allergic reactions to drugs containing sulphur, but some years later showed no reaction to a fluid tablet containing sulphur. I have drunk wine, eaten foods containing sulphites etc. |
But a couple of months ago, I was given the same fluid tablet after swollen legs after a long overseas flight. I broke out in a rash after the third day. That was over 2 months ago. I'm wondering if it can become like a cumulative poisoning affect? I went on a detox and limited diet to try to clear the rash quicker, and after only 2 glasses of wine last week at dinner I broke out in fresh rash (although the other one still has not completely gone). The rash sites are lumpy and red, mainly on my arms and face, although some also appear on my torso and legs. Does this mean I now have to steer clear of anything containing sulphurs?
I also have arthritis, gord, sjogrens' syndrome, scleroderma, a fatty liver and digestive tract problems. It has taken a few years to balance the medications to this point, and now I feel like I'm back to square one with diet issues. The itching and dryness of my skin is driving me crazy. Even clothes rubbing can make some of the more raw areas bleed.
I have to read this and other threads when I have more time, but it is nice to know I am not alone with this.
|Posted By : Alcie - 4/15/2012 8:24 PM|
|Sals, Sorry I missed your post. |
Yes, what you did was vlasalva maneuver. Get a copy of your medical record from the hospital and find out what the "spray" was. I keep a yellow card in my wallet with credit cards with my worst allergies on it.
Traveller, welcome to the forum.
None of us here are doctors. This rash might be serious. Definitely go to an allergist for a real diagnosis. Start keeping a good journal of what you eat, drink and your medicines, with the times and your reactions. This will help the allergist! Your rash sounds like a "true allergy," not just the sensitivity" that I have.
Do you know what the "fluid tablet" was? I'll make a guess at hydrochlorthiazide, which has 1000 to 2000 or so micrograms sulfite per pill depending on type. That would set me off.
"Detox" won't help sulfite allergy or sensitivity, if that is what you have going on. Neither will going vegetarian, all natural, or whatever. Sulfites are natural in pork, beef (to some extent), grapes, onions, etc. The only proven remedy is avoidance, although there are anecdotal stories of egg whites and other supplements helping somewhat.
It's possible to get new allergies and sensitivities at any time. I used to take Avelox for sinus infections, but now get hives, so can take nothing from the "Cipro group." Sulfa antibiotics, are different from sulfites in food, but a lot of people who are allergic to sulfa also have trouble with sulfites. Sulfites are common preservatives in medications. If sulfites turn out to be your allergen you'll want to look up all medications, reading especially the "inactive" ingredients.
No, it's not cumulative over time, but you can get a reaction if you go over your individual daily reaction-triggering limit. I got a lot of relief from my GERD (GORD) when I started avoiding sulfites. It was triggering my stomach to reflux, among my other reactions (notably tachycardia).
Avoiding sulfites in detergents might help your skin. I use only "free and clear" types and double rinse everything. Not a cure, but hopefully it will help. My allergist has me putting on a non-colored or perfumed bath oil, only patting dry. This helps keep moisture in my skin and stops a lot of my itching.
|Posted By : jsamms - 4/16/2012 12:47 AM|
|I have cut out my diet:|
WINE! It has sulfites in it and sulfites have been doing it!!!
Eating more and more healthy and trying to keep away from processed foods.
I have went a year with this diet and I have been a year free of symptoms. It used to come about EVERY month or more and ALL the doctors I talked with didn't know what to do AND I had one nurse that even laughed at me and thought I was crazy. I could hear her talking to other nurses about in in a joking way (probably should have sued but nahhh, too much of that going around).
Hope it helps!
|Posted By : sals - 4/17/2012 3:11 AM|
|Hello Janey P. I am also in the UK and so are a lot of us.|
I am sulphite allergic big times, hives, sleeps, pain. etc. etc.
If you go organic you will find a lot of the issues are more manageable, or even much better.
Anything with sulphite (i.e. almost anything from a supermarket) there is no other way than this lst step.
Sulphite is the best friend of the supermarket. And your enemy, so start from that and learn what you can from others on this forum. Good luck.
P.S. I cannot take "medication" from docs either. Most contain sulphite, be extra careful of meta-bisulphite. Best wishes.
|Posted By : sals - 4/17/2012 3:23 AM|
Can I just say this: you can wash your veg. as much as you want under the tap, it won't make the slightest difference at all.
Those chemicals sprayed on and in the soil is "fixed". Designed not to wash away in rainstorms, wind and gales. Otherwise farmers wouln't be able to use it to "protect" or "enhance" their crops. So they are totally "IN" the veg.
A matter of science.
|Posted By : Alcie - 4/17/2012 7:22 AM|
You are right. Washing does not get rid of sulfite within fruits and vegetables. Some, as in grapes, is natural, but there can be some from chemicals in the soil.
As for your medicines, you can avoid most sulfites by looking them up. Sites like drugs.com have the chemical picture of the drug and also a list of "inactive ingredients." If you see a sulfur with a couple of oxygens attached, be leery of taking it. I get reactions to additives like gelatin and sulfite-containing preservatives, especially in injections. Rick has a good list with amounts of sulfites in medicines in his paper book. The free online book is available at http://www.learningtarget.com/nosulfites/index.htm
. There is a charge for the paper book. I wouldn't recommend buying it to most people, but you have a severe reaction, and this is the only relatively complete reference available. I receive nothing for telling you about
it! I am not advertizing it! Read the online book free first and decide if you NEED the paper one. My reaction, while not a so-called true allergy, is life threatening (heart arrhythmias, tachycardia), so I do need it.
Some cardioesophageal reflex references:
http://www.medscape.com/viewarticle/407980_5 You can't read this one, but your doctors can.
Noncardiac chest pain (NCCP) is defined as recurring angina-like substernal chest pain of noncardiac origin. …. of the ambulatory population presenting with chest pain, only 11% to 34% are found to have a cardiac cause.Of those patients who undergo coronary angiography annually, about 30% have a normal test.
NCCP is common in the general population, and in many patients it is caused by GERD. The PPI test …. should be considered as the first diagnostic test when evaluating these patients. Patients with suspected GERD-related NCCP require long-term treatment with a PPI.
In patients with a negative evaluation for GERD, esophageal manometry may reveal a variety of motility abnormalities in the minority of patients. …. pain modulators, such as tricyclic agents, trazodone, and possibly SSRIs, may provide symptom relief regardless of the type (or even presence) of esophageal dysmotility.
|Posted By : momisj - 4/21/2012 8:45 PM|
|Is Great Lakes Gelatin a no-no for sulfites?|
|Posted By : Alcie - 4/22/2012 7:23 AM|
|Momi, welcome to the forum.
From their website, Great Lakes comes in porcine or bovine - pig or cow, plus a collagen product.
Pig and cow gelatins are made from skins, etc, soaked in a sulfite bath to soften the material. They will both contain significant amounts of sulfite.
|Posted By : cinains - 4/22/2012 12:17 PM|
|Hello all I'm new to this forum. In late Jan I broke out in hives and my allergist doesn't know why. My egg serum level was 1390, the highest on the range was 114. Since then my life has changed. Soon after I developed asthma symptoms such as shortness of breath. Then I caught conjunctivitis in Feb from my daughter. She was diagnosed with herpes simplex on. Her Dr didn't send anything to the lab though. My Dr sent an eye culture to the lab and it was negative cor herpes so I was diagnosed with conjunctivitis. Then in march I started hyperventilating. It got so bad I couldn't walk two blocks without suffocating. At the same time I got chronic diahrea. So I went to the ER and they treated my asthma. They only found many yeasts in my stool. I saw my regular Dr and she said my ige was high, my white blood cells were high, my platelets were high, b12 and d were low and phosphorus was low. So I started taking supplements. But a week ago the pollen shot up in nyc and it all starts then...Sunday we went out to eat, I had white tics grilled chicken and black beans, my husband had shrimps and sweet potatoes fries, I had one of his fries. 30 min later I felt tired, dizzy and had a foggy brain. I rushed to the restroom and thought I had a bowel movement but didn't. Soon had a rash on my chest and face, heart palpitations and shortness of breath. I took two benadryls and used my inhaled. 20 min later felt better. I limited my food intake afraid of what caused this. The allergist said maybe the shrimps...Thursday I felt off all day as if an asthma attack was approaching. I skkipped dinner since I wasn't hungry. I used albuterol in the nebulizer. A few mins layer ate salgine crackers. Soon felt shaky and had a foggy brain and again heart palps, itchiness and short of breath. Took benadryl but that didn't help, went fo the er. They only treated me cor asthma. With of without eating I now get the symptoms which are scary. A few weeks ago I would wake up with scratches on my body so I changed my soap and lotion. Two weeks ago my lips throat and tongue burned with anything I ate. Am I allergic fo sulfites? I know I'm allergic to eggplants since my mouth itches when when I have it. I've lost a lot of weight due fo diahrea and being afraid of eating.|
|Posted By : Alcie - 4/22/2012 2:23 PM|
|Welcome, cinains, to the forum.|
It's hard to know if you have a sensitivity to sulfites. First, we're not doctors, just patients. We can tell you of our experiences, but we can't diagnose.
I found help by going to an allergist with a similar question. She had me keep a good diary of everything I ate, drank, medicines, the times, and any reactions, especially within 2 hours. When I had a list of foods I suspected, I broke them down into ingredients and did "challenge testing." You can look up my old posts on how to do this by putting the words in the search box at the top of the page. That said, since you have severe reactions, need to go to the ER, I hope you will consult your allergist first!
Since you get a rash, difficulty breathing, and it's helped by Benadryl, you might have a true allergy, not just a food sensitivity. Even the sweet potato fries could have been sulfited to keep their color. I don't know what's in white tic chicken. Shrimp are often sulfited right on the boat to keep them from getting moldy. If they are not washed well they could have sulfite remaining, but you could have an allergy just to the shrimp. An allergist might be able to skin test for it. The blood tests are not too accurate, from what I've been told.
You mentioned a reaction after albuterol. Albuterol can strongly affect the heart. I had a bad reaction to it 6 hours after one puff, went to ER for tachycardia that wouldn't quit. I had previously been tolerant to it, no reaction at all.
|Posted By : cinains - 4/22/2012 3:36 PM|
|Thanks for the reply Alcie. I'm going through a serious of food allergies testing through blood and results should be in this week. I will ask if he can do the skin testing too. I have read online jams have a high amount of sulfites and I don't react to those so I'm confused. Right now I'm drained from poor eating and diahrea. Oh I meant white rice and chicken not tic chicken. This is all too scary. My regular doctor thinks I have a parasitic infection. But I've been to the GI and he found nothing.|
|Posted By : momisj - 4/22/2012 7:02 PM|
|A few days ago I realized I have a more serious sulfite sensitivity than I suspected. I have asthma but no inhalers since I took 90 days of zithromax for chlamydia pneumoniae in 2004. 3 years ago I had a very bad chest cold, the worst I had since I got over the episodes of acute asthma and pneumonia in 2004. A friend brought over some very hot peppers  and told me that would clear up my congestion. It had sulfites on the label. The next day I so bad I thought I had pneumonia again. A couple days later I was doing better so I had some more peppers and the same thing happened so I was sure it was the sulfites. |
A week ago I started on the Specific Carbohydrate Diet [SCD]as I have gained so much weight from taking supplements and what little processed food I was exposed to three weeks ago when I was out of state having oral surgery [up to 154]. My gut was damaged in 2004 after the prednisone and I took 2 ibuprofen 3 months later during an episode of pneumonia without any acute asthma and it gave me an ulcer and bad reflux. I have not been the same since. I was sensitive to citric acid and natural flavor if I ate it but at that point I could not touch it without breaking out. I am an RN and I have been trying to figure out why my health got worse when I had gotten over the acute respiratory problems. I went from 109 to 139 lbs after I started eating the way Ray Peat PhD recommends for low thyroid www.raypeat.com. I started eating eggs daily, drinking fruit juice, lots of milk, meat and Great Lakes gelatin to balance the amino acids. I kept gaining weight.
To try to heal my gut I started on the intro diet for SCD. Besides chicken soup with pureed carrots I was to eat homemade jello made with Great Lakes Gelatin and Knudson organic grape juice. I had burning with a BM. My next batch by mistake was made with half the juice and that was ok. When I made the third batch the burning again. I then ate a really big bowl and then had real loose stools. It was cautioned that the grape juice has sulfites so I figured right away that is the issue.
When I was pregnant 18 years ago [before I ever had a diagnosis of any asthma] my membranes ruptured 2 months early. I was given repeated injections of dexamethasone to help my son's lungs develop since a premature birth was expected. After the 3rd day I couldn't breathe and had bad blood gases requiring oxygen and my lungs were filled up. Now I know it was from the sulfites in the dexamethasone. I never knew until this past week that sulfites were in unpreserved foods. The gelatin, eggs and juice must have been causing all the fluid retention I have been experiencing all these years.
When I was 16 I took a sulfa drug and my only reaction was severe edema in my hands and legs. I had to go to the ER to have my class ring cut off.
|Posted By : ntl - 4/22/2012 7:47 PM|
|I am allergic to sulfa and sulfites. I am having a hard time finding a lotion that won't break me out into a rash and it hurts pretty bad. Does anyone have any suggesjtions?|
|Posted By : sals - 4/23/2012 1:42 AM|
|Hi to Phlox: Just wanted to say hello, from another sulfite sufferer from the U.K. All information posted on here is very valuable. Especially when relating to brands of any kind, and whether they are a vailable in different countries. What some people can use in UK is not always the same as in USA for instance. Also in the UK we may be reacting to different sulfites put into foods over here. But perhaps that are not in foods in other countries.|
I have ALL YOUR SYMPTOMS..... the worst is the heart Palps. But I must say they are much better keeping away from sulphites.
|Posted By : Alcie - 4/23/2012 6:59 PM|
|Welcome to the forum to all the new members!
sals - do you get PVC-type thumps or tachycardia? It's a good idea to find out what kind of rhythm it is. I get supraventricular tach when my stomach and esophagus have been exposed to sulfites. It's been recorded in the ER when I haven't been able to get it stopped myself.
You're right about different ingredients. We also have to watch brands - for instance, I can eat cheap brand cashews but not a major name brand. I called and they denied the nuts are bleached, but my esophagus doesn't believe it.
momisj - I'm glad you are getting a handle on your problem. There are lots more threads on the forum. Just go the search box at the top of the page and type in sulfites or whatever you want to read.
|Posted By : sals - 4/24/2012 5:50 AM|
Hi Alcie: Tachycardia. Ab.Fib. !!!I have heard it called so many names, I really don't know what it is. All I know is that my heart rate goes up to 120 p.m. at a steady rythm as far as I know. But you feel you are going to die. Can't even speak or move. Just lie flat.
Takes ages for it to go back into normal rythm. I am usually in hospital then.
P.S. Just want to ask you where a New post that it put up with this emoticons can be found. I find it very difficult to locate things on this site, as I can't find a page that is just "subject" listed. As on Sulphite Sensitivity site has.
pps. Do you re-act to printing ink, i.e. as in photo copies from printers.... Bye.
|Posted By : Alcie - 4/24/2012 7:51 AM|
To do a search, just put some keywords in the search box at the top of the page. You'll get pages and pages.
This site has all allergies and sensitivities lumped together. There are a huge number of sulfite posts, but the forum is not about just sulfites. I find it is one of the most informative sites though. There are a lot of posts from intelligent people. Some have "true allergies" with serious reactions. I've learned a lot here.
While tach is serious, it's still in the category of sensitivity, unless you get hives of something also. I've had heart rate over 165, couldn't get it down with valsalva, beta blocker, nitro. I had to have chemical cardioversion in ER. I'm still walking around at 120. If it goes on long, it brings on exhaustion feeling, because it causes very low blood pressure for me. I got a little wrist BP monitor. I take 1/2 atenolol daily if my pressure is high enough. If I take it with low pressure it puts me on the couch. It works longer than Inderal, which lasts 2 hours, but I can use it to slow a tach event when my pressure is low.
These things work for me. Talk with your cardiologist about your symptoms and reactions.
|Posted By : momisj - 4/24/2012 11:00 AM|
|does dutch processed cocoa contain sulfites?|
|Posted By : Alcie - 4/25/2012 10:09 AM|
|The only cocoa I can find, Hershey's, has 140 micrograms per ounce. That's not a lot. Nestle Baking Chocolate appears to have 70 in 1/2 ounce (same as the cocoa). The listing says it's natural in the chocolate, not added.|
You have to use sugar to make them palatable, so you're going to add a whole lot more there.
I personally, can eat one small milk chocolate bar, but not the dark chocolate. That's my sulfite limit for the whole day though. I can get away with a small piece of chocolate cake, but not more, or anything else that has sulfite for the whole day.
|Posted By : regansbox - 5/13/2012 9:17 PM|
|My mom has a sulfite allergy, and today while I was looking at Panera's menu to see if there was anything she could eat, I noticed they had this warning posted: |
Canada notice: Many of our products also contain or may come into contact with common allergens, including sulfites and sesame.
That made me wonder, like Stella5, whether anybody here eats out any more. Are there specific things at particular restaurants you guys know are safe because they're well within your tolerance levels?
Surprisingly, it looks like Subway's Italian bread, at least, doesn't have sulfites in it:
Red, Hot, and Blue (barbecue) has a similar chart:
Pei Wei (which implies that PF Chang's should have one, too, but I don't see it):
These aren't local to us, but for anyone for whom they are:
damons.com/interactivemenu.cfm (you gotta select what you want to eat first...)
Of course, I imagine there's a possibility of cross-contamination eating at any of these places, but I'd think that the possibility of a reaction would be much lower. Anybody else have one to add?
|Posted By : alphagirl - 6/9/2012 1:37 PM|
|Well, on the one hand I am thinking - yay - at least they are LISTING sulfites. On the other hand, woe to anyone who for an instant believes that the foods any of those places listed without sulfites actually don't have sulfites. I am glad they are trying, but those lists are ludicrous! Now, I am willing to believe they don't ADD sulfites to any of those foods - but I am also quite certain that 99% of them either have sulfites added to the ingredients or they have naturally occurring sulfites. Someone is going to get really sick or die with this type of misinformation out there - please be careful!!|
|Posted By : MsMims - 6/9/2012 1:55 PM|
|I have a sulfite sensitivity. Guess you call it an allergy. I go anaphalactic when I get ahold of sulfites in medication, like the full swollen face, neck, extremities, can't breathe, grab your epi/pen kind of reaction. Absolutely crazy. Oh and I can't drink or eat anything with wine because of sulfites. If I drink it (just two or three sips) it's coming right back up. If it's in food, my gastronomic system is screwed for days and I feel achy like the flu.|
|Posted By : SaffronVZ - 6/13/2012 1:06 PM|
|I'm also allergic to sulfite/sulfates, and I have pancreatic enzyme deficiency which causes me to have troubles digesting fats, also I had my gallbladder taken out because a med I used to take caused it to die. I also have crohns disease, hypoglycemia, severe migraines, just to name a few of my other problems I sadly have more but the reason I named these is have anyone else had any of these problems to with there sulfite/sulfates allergy if so what can you eat I'm having problems finding anything to eat?! I can't have sugar except for naturally occurring in fruits, veggies, honey ,or agave nectar. Also I have to have as much as possible fat free foods. Also foods that are alkalining, not acidic. I'm allergic to corn, and dairy as well. I also have to have low amount of carbohydrate because of my sugar sensitivity. Anybody have any recipes of ideas of what I can eat that will be ok for me?|
|Posted By : ellasmum - 6/22/2012 9:07 PM|
|My six year old daughter has struggled with severe bloating and flatulence for the past few years. We had suspected a lactose intolerance and eliminated it but it improved only marginally. Today was particularly bad and I had an A-HA moment when I remembered that she had had dried mango today and the last time it was this bad she had also had a snack of dried fruit. That lead me to googling sulphite sensitivity and this group. Most published symptoms seem to talk more of headaches and breathing issues and rashes (she does have eczema) but I wonder if her gastro-intestinal issues could be related to sulphites. Are these known symptoms?|
The more I read, I actually wonder if I too have a sensitivity. I get frequent headaches (especially if I drink wine) and do have an allergic reaction to sulpha drugs. Are they related? And if I do, could it be hereditary and I've passed in down to my daughter? Any information you could pass on would be appreciated.
|Posted By : MadgeW - 6/27/2012 11:24 AM|
I am new to sulphite/sulfite sensitivity, in that I just realized a couple of weeks ago that sulphites may be the root of my problems (fibromyalgia, recently diagnosed) and so have just started reading as much as I can about it. But in hindsight, I've had problems with sulphites for years. I often flushed while drinking wine, dried apricots gave me a bad stomachache, and I have had a lot of random gastro problems for which I could never pinpoint the cause. I even sometimes have a stomachache from bottled water, and now I understand some brands have sulphites.
I have so many questions, though and I don't know where to start.
First off, could my B12 supplements contain hidden sulphites. Here is the ingredient list, does anyone recognize potential source of sulphites? Does anyone have a different brand to recommend (these are Jamieson 1200 mcg slow release tablets):
Cellulose, Dicalcium Phosphate, Vegetable Magnesium Stearate, Water-Soluble Cellulose, Brazilian Palm Tree Wax
One of my other questions is related to coconuts. I know dehydrated coconut is sulfited, but why are coconuts themselves often found on lists of sulphite containing foods. Are they naturally occurring in large amounts? Is it safe to use toiletries and cleaning products with coconut oil? Has anyone found brands that they can use without a reaction?
Also, if peppercorns are sulfited, does that mean that other spices are too? Is there such a thing as organic peppercorns that are not sulfited? If it is from the charcoal, is it safe to bbq foods at home? Is it a particular kind of charcoal that is bad?
Does anyone know about the sulfite levels in filtered water? I was using a Brita filter every day before my fibro symptoms started in January, but my naturopath says it is unlikely that this would have had a lot of sulphites. Is any filtration system safe?
Finally, I haven't yet found a good list that provides the levels of sulfite in fruits and vegetables. Other than grapes, and maybe onions and garllic, do I have to avoid other fruits and veg? Are these okay if I cook them?
Sorry for all of the questions all at once, but I am getting frustrated and discouraged with this, and would appreciate any advice that you may have for me! I have read a lot of the frequently recommended sites, but I find there is so much conflicting advice.
|Posted By : fullcontactcook - 6/27/2012 4:45 PM|
I empathize with your frustrations. I think the advice is conflicting b/c everybody's body is so different even if we all have sulfite trouble.
I don't have any clear answers for you besides that paprika usually always has sulphur dioxide with it unless it's organic. HOWEVER, DON'T GIVE UP! I'm grateful on your behalf that you have discovered what might be causing you trouble...you might not get your body and how it responds figured out today or tomorrow, but it's totally worth taking it one step at a time.
I was depressed and overweight as a kid and in college got terrible chest pressure and had my first major scary reaction at 21 when I had red wine and cheese together for the first time in my life. Benedryl helped. My doctor put me on meds, but I was sure it was food related. So I saw a nutritionist/holistic health practioner and she had Dr. Amy Yasko's Nutrigenomic Methylation cycles blood test done were I learned that my SUOX gene is varied along with some of my neurotransmitters. That basis has helped, but the reality is that it's just a day to day, listening to my body. I tested my urine sulfite levels through my health practioner for a time to know what it feels like to be high in sulfites. Now I know that if I feel heavy and achy and cry (when I'm not PMSing), my sulfites are high and I need to back off on some foods.
I was so sick for awhile I couldn't work, but now I found the joy of my life working with the elderly and I hold down a full time job with benefits-----a true miracle!
I've been on the "I'm aware of my sulfite issue" journey for some 10 years now and it's HARD, but as I keep accepting it and doing my best with what I eat with knowledge that is experiential mostly and also from the recommended sites.
I find that for me it's a balance, where I'm never quite sure where my tolerance levels are at regarding naturally high sulfur and sulfite foods. I completely cleaned my system out over a span of 3-5 years and am slowly trying to add foods back in to see how I react and sometimes I crave the foods I react to and then have to readjust. I've cut out the obvious things that clearly say sulphur dioxide on the labels. And from there, it's been by elimination diet and listening to my own body. I do a lot of bodywork, too: acupuncture, spinal network, chiropractic, sauna, cranio sacral massage and meditation and prayer counseling.
I instantly react to wine (even some no detectable sulfites organic ones) with flushing and tingling in my face and sulfited shrimp effects my face and neck with tingling and pressure. Benedryl always stops it but I also have an epi pen just in case. I also don't eat wheat or fermented foods.
Hang in there. The journey is worth it!!!!!!!!
Post Edited (fullcontactcook) : 6/27/2012 4:13:06 PM (GMT-6)
|Posted By : fullcontactcook - 6/27/2012 5:54 PM|
|stella5 and regansbox,|
I don't eat out and always have some negative ramification if I do--fatigue, gastro-intestinal, headache, or allergy reaction. Because I don't eat wheat, I find gluten free restaurants to be the friendliest to my body and the most open-minded restaurant staff regarding allergies and intolerances. It has really impacted my social life, but I'd rather be healthy enough to work and I deal with the social stigma. I eat all organic food and organic/grass-fed dairy and meat as much as possible.
|Posted By : ShaunaZ - 7/29/2012 2:59 AM|
|Hi, everybody. |
I'm somewhat new to the whole sulfite allergy thing - five months now. It's been the most recent discovery in a series of 'what's wrong with me now' revelations, but I'm crossing my fingers that it will be the last of them. I look forward to learning from everybody here! I'm sure I already have from some of you. I've been haunting every sulfite- free place I can find, at this point, to try and get a handle on this!
My initial reactions involve vertigo, cognitive impairment, nausea, and so on. Onset is less than 20 minutes after ingestion or inhalation. I only seem to get hives when I've been getting a higher sulfite load for a few days in a row, and then it will get worse and worse until the smallest amount can set off hives. I have no idea if that means this is a sensitivity or an allergy, at this point.
I also have Celiac Disease and if I get gluten contamination, my sulfite tolerance drops like a stone. I had my molybdenum levels tested once (not the greatest test, admittedly), and I had undetectable levels after getting gluten cc. So I assume that my absorption is affected and therefore my sulfite oxidase levels. In this case, it only seems to affect the initial symptoms of vertigo and such, not the hives.
I'm looking back and seeing a lot of sulfite signs I wish I could have known about when I was younger. I imagine a lot of people here have that. This can't be an easy allergy to figure out unless one reacts to a really obvious sulfite source right away, yeah?
I've hated high sulfite foods my entire life - dried fruit, wine, etc... The one time I actually had a few glasses of wine, years ago, I was sick for well over a week. It's something that makes me realize how lucky I've been when I really think about it. At the time, everyone assumed I just got really drunk, really fast, because my initial reactions mimic intoxication so much. So I was tucked away in a bed and left alone the rest of the night.
Thank god I don't have hives and breathing issues, or I don't think I would have been there when they came to check on me the next morning.
There's lots of other things to look back on and wonder about. No idea how to deal with them now, though. I always seemed to have side affects to any medication I took and tried to avoid meds as much as possible. I have a dozen allergies to medicine listed, but after examining that recently, I realized that all of these medications ALSO have sulfites in them, so I have no idea now if it was sulfites or the medication that I reacted to originally. No real desire to test it out, but at the same time, it would still be nice to know.
Currently, I react to sulfa drugs, to sulfites, and to foods naturally higher in sulfites or sulfur oxides (I think that's the right term? Unsure). I'm also get neurological damage after ingesting even a tiny bit of gluten contamination and I have a few other allergies as well that I have to avoid (dairy, eggs, soy, coffee, and sugarcane, mostly).
So as you can imagine, I don't eat out and I cook everything from scratch now. And I'm not that great a cook, so my tongue and stomach complain a lot, LOL. I am hoping to find some people who have some utterly amazing recipes for sulfite free stuff...that is such a simple recipe, a monkey could do it. ;-)
Again, looking forward to getting you know you all.
|Posted By : Alcie - 7/30/2012 1:27 PM|
It sounds like you have an unusually good knowlege of sulfite allergy/sensitivity. Sorry you have other allergies also. I have lactose intolerance, but can eat other dairy, or just chew up half a dozen lactaid tablets.
There are some lists of meds containing sulfites, but only one lists the amount. It's in Rick's book.
http://www.learningtarget.com/nosulfites/index.htm There is a charge for the book, and I get nothing for telling you about it. I bought it because I have a lot of conditions and am constantly being prescribed stuff that gives me reactions. You still have to check if this is the most recent information, but it's the only resource I have found. I recently had to have IV feeding (TPN), which Rick says is loaded with sulfite, but was able to find brands online without sulfite now. It's made like gelatin - from pig skins and bones, soaked in sulfited hot water. I can't eat gelatin!!! Pharmaceutical companies must be removing the sulfite from some brands of TPN now.
As for recipes, I just cook with foods that are low in sulfites, which means mostly veggies and chicken. I use only individual spices, never pepper or onion or garlic.
The main thing is to avoid processed foods. I avoid eating at chain restaurants, or for that matter eating out even at friends and relatives. There's a website online somewhere that lists restaurant foods by allergens.
|Posted By : lisaloo99 - 8/4/2012 12:13 PM|
|I am gluten intolerant and anemic. I am juice fasting with beets carrots kale. I am taking an iron/folic acid/b12 pill for the iron deficiency and I have been feeling ok. Last night I ate a salad with kale cucumber red onion red pepper and red wine vinegar. Then some dark chocolate. Ouch! Looks like I overdosed on sulfites! I am posting for people who have symptoms like mine, as they are not yet mentioned on this forum. Shortness of breath, brain fog, fatigue, fascia pain. I hurt all over, especially the back of my neck and my back. Severe back pain. I sometimes get chest pains, which is just the fascia locking up in my chest. Feels scary but it's not heart. So fascia cramps up and I can hardly move. Google fascia if have this symptom. They would probably diagnose me with chronic fatigue syndrome or lupus or fibromyalgia. But it turns out I have food intolerences to gluten and sulfites, and iron and b12 deficiency and my fascia is reacting severely. So take iron, b12, folic acid, avoid gluten and sulfites, and when I accidentally ingest either gluten or sulfites, take benadryl and lots of b12 and wait it out. For me it takes 3 days for my system to flush it out. Problem has been that it was constant because I didnt know about sulfites till last night. Thank you God for leading me to this website. And thank you everyone here.|
|Posted By : Alcie - 8/5/2012 2:19 PM|
Red wine vinegar plus onion plus chocolate? That would overdose me too!
You might want to see a rheumatologist. I have fibromyalgia plus sulfite sensitivity, and having more than one condition is not uncommon.
I'd check more into the chest pain issue too. Back pain, if it's in the thoracic area, is often from the heart. My sulfite intolerance starts with my esophagus, then the stomach, then the heart is triggered to beat way too fast. This causes shortness of breath and fatigue. I had a bad episode last night, speed 165 BPM, fortunately only 20 minutes with treatment. I took an aspirin (tachycardia can cause a clot to form and cause a heart attack - had that once), Inderal prescribed by my cardiologist (works very fast), and did valsalva maneuvers. You should check your pulse rate, if you don't already, because you can't tell by just how you're feeling. Look up cardioesophageal reflex or linked angina.
How did you discover your intolerances? I keep a food journal.
|Posted By : Klts93 - 8/15/2012 4:10 PM|
|Hello, I am new to the forum. Quick question for someone, please. What Chapstick do you use with a sulfite allergy. I am to scared to experiment. I have only been having reactions for the last 17 days. I have lost 10 pounds and slowly reintroducing foods. My lips are so dry. Thank you. |
|Posted By : Alcie - 8/17/2012 1:22 PM|
|Welcome to the forum, Kary.|
So sorry you are having a tough time with foods.
I prefer regular Chapstick, but have had no problems with no-name ones. I don't do well with Banana Boat, or soft products. I also avoid scented and colored ones. SPF is OK for me. If I have nothing else, plain Vaseline will do, but doesn't stay on as long.
Make sure to keep a good food journal with dates, times, foods, drionks, medicines, and reactions. I usually react within a half hour to 2 hours, but some people have to look at a day or two back to find their triggers.
Read the old posts! You can search by putting keywords into the search box at the top of the page.
Let us know how you're doing!
|Posted By : cri - 8/18/2012 10:34 PM|
I have just been diagnosed by a doctor -allergist in Canada -with a possible sulfite allergy in foods-started to get rash on head and eyelids and bloating -not as bad as some but discomfort etc plus eyelids look horrible! Anyway I wanted to tell the lady with the intense burning from the shampoo that I started to use bicarbonate of soda couple of tablespoons mixed with warm water then two rinses of castille soap -if you can tolerate it-anyway for the first three weeks my hair was hideous really greasy after only a few hours as you would expect but due to continued scalp and eylid rashes persisted with this approach -after three to four weeks my head and hair has rebalanced itself to accept this new "shampoo" and believe it or not its less greasy than it used to be with the sulfite shampoo-my relatives think this sulfite "diagnosis" is rubbish as I am usually healthy but my husband whom I have been married to for 19 years -thinks it all makes total sense-feel poisoned after airport and Asian food etc etc
|Posted By : Alcie - 8/20/2012 3:10 PM|
|Welcome, cri, to the forum.
Sulfite allergy and intolerance are well known now and certainly not "rubbish." Thanks for yout tip on dealing with it.
|Posted By : mikemac - 9/16/2012 2:15 PM|
| I was diagnosed with sulfite allergy 4 years ago. but after i left out sulfites from my diet,i did much better but there were many fruits and vegetabls and pure foods that were still making me ill. 3 months ago i nailed it! And anybody else with sulfite intlerances or true sulfite alleregy may want to read about pst deficiency. Dr rosemary waring has a whole sight for anyone to read. Its been a big life change for me.. turns out my body wasnt producing or reataining sulfates in my liver..i been supplemeting with epsom salts baths and 6 weeks later i can eat just about anything and not get any ill effects.. keep in my i went to the emergency room 8 times in the last 2 years with anaphylactic shocks !Very serious and life threatneing . I went back to my allegy dr who diagnosed me with the true sulfite allergy and he never even heard of the PST deficiency,and he was very wrong with his poor partial diagnoses. he never even heard of amines! and barley new about salycalates . if you use the epsom salts it must be done very slowly. 2 tablespoons for a 20 miute soak, and increase a tablespoon or 2 each time and keep increasing with each bath as long as theres no reactions. Read dr rosemary waring. she is the dr who identified the pst deficieny.SHes the best on the subject! she work s in the uk.but her sight has it all.. turns out a few people i new who also had been diagnosed with sulfite allergy from this dr ,all had the pst deficency,and thanks to me and dr rosemary waring these people are getting the help they need and are able to make full sense of all the madness..|
|Posted By : Alcie - 9/17/2012 6:34 AM|
|Mike - It would help me understand this research if you would post some links to some actual research articles. Her Wikipedia article is only a "stub," and googling her name seems to only find descriptions, not actual research and not anything significantly substantiated by others. I cheerfully admit I haven't read much though.
As a sulfite intolerant, I'd love to pursue this topic more fully! I completely ignore testimonials and articles of type I posted below until I find scientific corroboration. While this sounds interesting, and I agree that food additives are going to be found to be worse than I even imagined, I am leery of studies unless they are large and repeatable.
"However, this same enzyme is needed in the GI tract to handle high-phenolic foodstuffs that were eaten - most especially items such as food additive chemicals, food dyes, and salicylates. What the enzyme does, specifically, is attach a sulfate ion to the phenol part of a chemical (e.g., a neurotransmitter or Red #40) and this prepares it for processing.
When there is not enough of the PST, there is a backup system called the "glucuronide" system in the GI tract, but there is no backup system for the brain. Thus, when you're out of PST, you're out of it in your brain, creating problems of mood, activity, and cognitive function."
|Posted By : Emma10 - 9/17/2012 9:34 AM|
I too have a sulphite allergy and in the UK little is known about it. Over the years my tolerance level has reduced and I am now finding I am reacting to things I was once fine with. Alcie your information has been invaluable, as has the no sulfites website I found several years ago, but at the moment I am reacting badly to bread, even when it is home baked. Do you have any advice?
|Posted By : mikemac - 9/17/2012 9:37 AM|
|att Alcie.here is Dr rosemary Waring sight.|
http://www.enzymestuff.com/epsomsalts.htm this will take you to her sight.. gd luck ,hope it takes you closer to the root of your problem. It did for me.. i think these drs treating sulfite allergys have missed this part completely and if they are treating only the sulfites,then they are missing the big part of it.. i no longer believethat people can have an allergy only to sulfites,,no way other factors playing huge role here and rosemary found it.and she is recognized for her work,even the government turns to her for tsting and results in this field. go get your understanding and make complete sense of whats going on.
|Posted By : Alcie - 9/17/2012 5:29 PM|
|I checked the site but found no scientific evidence, only summaries of conclusions with no links to where they came from. I must have missed something somewhere. I didn't see who wrote that site.|
One study I found is a 2004 study of 19 normal people in whom magnesium levels were measured after they soaked in MgSO4 baths. Another study was an in vitro study of cells regarding sulfotransferase. A third unpublished 1993 study was said to show low sulfate in 13 autistic children.
|Posted By : mikemac - 9/17/2012 6:18 PM|
|Also are you at all familiar with dr Amy Yasko. She's the best here in the USA on the PST deficiency. Did you read the one with dr rosemary on the Epsom salts.she talks about it in there..also look at e methylation cycle that's where the problems occur. I don't have my access to my flew at the moment, but I want to co plate the package to you..if u want to share an email I can dump a bunch of data on there..I haven't figured how to drag my saved favorites to the forum.. But I need to complete this for you.|
|Posted By : mikemac - 9/17/2012 6:53 PM|
|http://treatautismnow.wordpress.com/2010/06/05/phenols-pst-and-sulphur-metabolism/ this is some good data on the subject i talked about here. see if you can pull that up Alcie|
|Posted By : Nobledrew7 - 9/26/2012 7:40 PM|
this forum was very helpful, thank you all for your posts.. I was wondering as well many sources tell what foods*NOT* to eat with sulphites, but there's a plethora of foods on that list, nearly 80% of the foods we consume and from super markets etc contain some sort of sulphite or preservative.. So instead of not what to eat, what can we eat? What are good non suplhite diets that we can adhere to everyday making sure our intolerance doesn't get the best of us. Anyone know any whole day diets (breakfast, lunch, and dinner) that has worked for them.
Thanks and God Bless.
|Posted By : Razzle - 9/27/2012 6:51 AM|
|Not much left for me to eat, being also gluten sensitive and with a ton of food allergies in addition to the sulfite issues... I basically can only eat rice, potatoes, butter, cheese, and a few fruits & veggies (sparingly).|
The biggest help for most with sulfite issues is supplementing Molybdenum. The enzyme that processes sulfites depends on molybdenum to function. Deficiency of molybdenum, therefore, can be one cause for Sulfite Sensitivity (and also Multiple Chemical Sensitivities).
Another thing that has helped me is Yucca root, because with my particular methylation cycle genomic variants, I tend to produce too much ammonia. Yucca root helps to bind and eliminate the ammonia.
Also, Vitamin B12 is critically important for those with methylation issues such as myself. I have to get mine via shots, because my gut is too messed up and I can't seem to even absorb sublingual Vitamin B12.
Chronic Lyme, Bart., Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut dysmotility & non-specific inflammation, Lupus, Osteoporosis, etc.; G-Tube
Meds: Flagyl, Domperidone, Claritin, Singulair, Andrographis & other herbs, homeopathy, supplements, etc.
|Posted By : MarmiteEnthusiast - 10/6/2012 12:53 PM|
|Finding the amount of info in the thread huge! Could anyone tell me if I need to be worried about which brand of vitamin supplement to take. I want to follow the advice I read here and take a suppliment to see if it improves my symptoms...but I am scared....|
|Posted By : norravavare - 10/23/2012 4:33 PM|
|Hi. I just signed up for this site because of this thread. I've read about half of it and my eyes are blurry... but anyway. |
Does anyone else on here have a sulfur intolerance/allergy to all forms of sulfates, sulfites, sulfa etc? I get allergic and intolerant symptoms to food/medications and personal care/cleaning products. I have found people with one or the other, but no one with both. I have spent the past 16 years trying to track down why this is happening and how to help myself. I also have a slew of doctors who don't believe me. I dont look sick and all my typical blood work is perfect. The only thing that has helped is avoidance and regular acupuncture. The older I get the harder staying healthy and pain free is. I had a magnesium sulfate IV a few years ago and I cant seem to recover from it. This appears to be hereditary. My grandmother had all my health problems and more. My mother seems to have much milder version of my "allergy".
|Posted By : svb2003 - 11/5/2012 2:10 PM|
|I see a number of people saying that B-vitamins are important to take when you have sulfite intolerance issues. I'm eating fairly safely, but can't seem to put weight on. I keep losing and losing and now it's getting dangerous. Besides being terrified I'm exhausted. I know I don't absorb much, I have no colon due to Crohns Disease surgery so I'm at a disadvantage to start. |
Does anyone take a B-Vitamin or Multi-Vitamin supplement successfully? I'm willing to try just about anything, I go for acupuncture twice a week and it has been helping, but I still keep losing weight. We're trying me on some herbs, but they seem to upset other things...no sulfites or corn starch or anything in them, we've done crazy research on that front.
I know I need supplements, B-Vitamins are a good place to start. I'd REALLY like to avoid the injections if I can, I've been poked and prodded FAR too much.
Thank you, I really appreciate the help!
|Posted By : Alcie - 11/6/2012 8:04 AM|
|For those posting about not being able to eat anything:|
As long as you cook your own food from scratch you can eat most foods. Of course avoid pork, and onion family. I have to keep beef to very small portions. Other than that, the basic unseasoned (except salt) foods should be OK, but that's what keeping a Food Journal will help you figure out.
For most of us, if you don't have other intolerances and allergies, the main thing is to avoid processing of any kind. Corn is fine, but dextrose and corn starch are toxic. Anything processed from pork, eg. gelatin, is very toxic. Mixed seasonings and those with pepper can be sulfited, but individual spices should be fine.
Raw nuts are mostly OK, but roasted nuts are often bleached with sulfite.
Home made bread or bread from a bakery that advertises no preservatives is mostly safe unless you have a wheat problem.
I only take a tiny daily multivitamin with no additives, because I can't swallow the horse pills. I need B12 because of stomach surgery. I take 2000 units of D twice a day in winter, once a day in summer because I had my D level tested. Add 100 units of D for every 1 (whatever that unit is) you are low. You can look that up on old posts - see search box at top of page.
There's no reason to be hysterical or avoid eating anything that has a tiny amount of sulfite. Look at the websites in the old posts. There are lists of sulfite levels and Rick's No Sulfites website will teach you how to calculate your tolerance and the amount of sulfite in portions you consume.
The Housemouse website has a lot of information for those who have sulfate in skin and detergent products.
I'm not much of a believer in alternative practices, herbs and potions. I'm doing well just staying within my tolerance level. I do not have the extreme "allergy" to sulfites, but I do have life threatening reactions. There may be some truth in molybdenum and other things, but I have no personal experience and have read no scientific research.
Most doctors don't believe us, but my allergist does. She guided me through keeping a journal and food challenges. You can find all the information by putting some keywords into the search box.
|Posted By : UKNewbie - 11/10/2012 6:23 PM|
I've stumbled across this forum by accident after my dinner made me most unwell (I was looking for a connection between foods I know I am intolerant to and food I ate tonight).
I'm an asthmatic, onion intolerant, migraine sufferer with ongoing abdominal problems which the doctors have been unable to diagnose the cause of, so I am sure you can understand why this thread caught my eye.
I'm interested to know, particularly from UK sufferers, how they approached their GPs with regards to investigating whether they have a suphide/sulfite intolerance. I think my GP thinks there is something in my illness, but I suspect the consultant I have been previously referred to (and am seeing again this week) thinks I am a bit of a hypochondriac, so I'm not sure how it will be taken if I suggest looking into this.
Also, a quick question - has anyone experienced elevated liver functions in blood tests (part of the reason for my latest consultant visit), or occasional blood blisters on the tongue (the latter seems a curiosity to my doctor but not anything they have tried to investigate! Info I've found on this symptom is minimal, although it is suggested that it is related to reactions to food)?
|Posted By : Alcie - 11/10/2012 8:05 PM|
|Welcome to the forum, UK.|
Read through this thread and also look up some of the others. Put a few keywords into the search box at the top of the page. There's tons of threads, hundreds of posts.
The only way to find out what your food intolerances are is to keep a very good food journal and after you have a partial list try food challenges. How to do this is in several of the posts you can look up. Talk with your doctor, preferably an allergist, about your particular reactions and whether it is safe to do the food challenges. I get tachycardia (rapid heart beating) so I had to be extra careful. If you get asthma attacks it could be dangerous to eat too much of a food trigger!
Sorry, but I don't know anything about the liver problem or tongue blisters. I get a lot of gastric reflux reaction, but if you have a "true allergy" (look up the difference between this and "sensitivity") maybe you could get reactions like those.
|Posted By : Coljones - 11/29/2012 3:04 PM|
|Hi, my name is colin.
I am 42 & have been suffering with sulphite intolarance for a couple of years or so.
My symptons range from tingling & numbness in arms and legs,heart pulps,bowl & stomach probs,throat restriction to neck pain leading to total loss of feeling from neck down and black out followed by two day migrain. Pretty scarey really!!!
Waitrose will very kindly print off a list of there products that dont have sulphites added.
TO BE USED ONLY AS A GUIDE!!!! sulphites contained naturally not listed.
I have also become intollerant to MSG & SOYA so food shopping is becoming difficult.
Doctor has given me epi pens (loaded with sulphites) but when needs must.
If anyone can help it would be great.
|Posted By : Alcie - 11/29/2012 7:58 PM|
|For a good list foods containing sulfites and how to calculate the amounts in foods try the free online book at http://www.learningtarget.com/nosulfites/index.htm|
The problem with prepared foods is that sulfites may be in a large number of their ingredients. This book also lists amounts of sulfites in natural foods.
The author is also a migraine sufferer.
|Posted By : Razzle - 12/5/2012 10:34 AM|
|Yes, I know of others with sulfite intolerance who had elevated liver enzyme leves.|
And I myself have gotten blood blisters in my mouth from dental injections (most of which contain sulfites) and from supplements or foods containing sulfites.
norravavare -- Yes, I am also intolerant to most all forms of sulfur, not just sulfites. I cannot use products on my skin that contain sulfates, cannot eat foods high in sulfur (cabbage family, onion family, etc.), cannot take medications that contain sulfa (sulfasalazine, many diaretics, etc.), etc.
If magnesium sulfate initiated a reaction for you from which you have not recovered, I suspect you have a problem with methylation. Methylation is needed to process most everything (environmental toxins and metabolic byproducts).
Dr. Amy Yasko has a nutritional protocol for those with genetic variants in the genes that control methylation. These genetic variants cause over- or under- function of the various enzymes involved in methylation, which can then affect many aspects of health.
Email me if you want more info (click the envelop icon under my name on the left).
Chronic Lyme, Bart., Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut dysmotility & non-specific inflammation, Lupus, Osteoporosis, etc.; G-Tube
Meds: Flagyl, Domperidone, Claritin, Singulair, Andrographis & other herbs, homeopathy, supplements, etc.
|Posted By : Steffanie - 12/23/2012 3:07 PM|
|Hello there. I cannot tell you how happy I am to have found this forum. I have read the first 5 pages or so of this sulfite thread, and then I zoomed to the last one to make sure that the thread is still current. Hurrah! It is!|
I am a severe asthmatic and have many allergies including food allergies. about 5 years ago I began to suspect that I had sulfite sensitivity as well. After calling every allergist in the city I finally found only one who had knowledge of the problem. After going to him he confirmed that I had a problem with sulfite, but did not want to do the test to determine intolerance because my asthma is so severe and he did not want to risk making it worse.
I must say that after reading your posts I feel validated. I had suspected that everything ~ even the filtered water that I drink ~ was causing problems to a lesser or greater degree. I also suspected the tea I was drinking, chocolate ~ all of the things that I am finding mentioned here.
The most distressing manifestation of the problem is a horrible facial rash. It was so bad at one point I didn't leave my house for 6 months ~ thankfully I am retired from work.
Because massive doses of benedryl and zyrtec seems to help me, I suspect from your posts that I have an actual allergy to sulfites. I was told that it is not an allergy, but an intolerance... but I questioned that when I was told, and now from your posts I think the physician may have been mistaken.
I am also allergic to sulpha drugs, and foods high in sulfur seem to bother me. Many things which I have read say that there is no connection between these three problems, but I really question that....
It is so very difficult to find things to eat, because in addition to the sulfite problem I am also allergic to apples, pears, cherries, strawberries, bananas (caused anaphylaxis many years ago), grapes, peaches, tree nuts, legumes (peanuts, soy, beans, peas), tomatoes, onions, garlic and hops. And now I find that I must also avoid cheese and eggs ~ I found this site because I had a reaction and all that I had eaten for two days was cheese!
I also have avoided processed meats, and most processed food.
I long ago eliminated any foods with vinegar, which means no condiments or salad dressings, nothing pickled... and no breads or pastries.
I also get the itching throat, asthma, gastric reflux, rapid heartbeat. I had suspected that some of my asthma meds were making me ill too, and it seems from what I have read here that I may be correct. My inhaler makes my throat itch now... it didn't before, but they have changed the propellant...
Thank you so much for being here. At the very least I have some place to come and commiserate, and I have already learned a lot and am now able to feel less paranoid about thinking that nearly everything is making me ill. Thank you, Thank you!
Post Edited (Steffanie) : 12/23/2012 4:03:18 PM (GMT-7)
|Posted By : Dawn12884 - 12/31/2012 7:45 PM|
|Hi all! Like most of you I have a sulfite sensitivity (going on 10 months or so now). I have done a ton of research and am managing my symptoms fairly well. My allergist (who "diagnosed" me) has me on Zyrtec and Singular daily. Those have the added benefit of helping with my other seasonal allergies I also have an inhaler to use when needed, and an epi pen (hopefully I never have to use it!). I also take B12 vitamins which help sooooo much (I can definitely feel the difference if I miss even one day). I would like to try taking Molybdenum, but have read conflicting reports on its usefulness (I'm a scientist, and have read may different peer reviewed articles with different experiments) anyone else have any thoughts? |
I have done pretty good cooking from home, and its not a huge deal to me at all since I love to cook. I would like to know what those of you who are loosing weight are doing because I can't seem to loose anything! (I may also have hypothyroidism). I have found many substitutions to normal food, and am in the process of creating a cookbook so that people know what they CAN eat as opposed to what they can not eat. This forum has been helpful, since many of you have issues with more than just the foods I have issues with.
I so far can not tolerate vinegar. Sometimes rice vinegar is OK depending on what else I have had that week, but I try to stay away (I usually only have a little when eating sushi once a month). Corn starch is another huge one for me. I do okay with potato starch, but try not to eat it if I can. Tapioca starch is much milder and I am okay with it in small dosages. Anything malted is EVIL, as well as molasses, maltodextrin (tapioca maltodextrin isn't so bad), and a few other things.
|Posted By : Razzle - 1/1/2013 6:48 AM|
|Molybdenum helps me...if I'm late getting my dose of molybdenum or Vit. B12, I go into anaphylaxis from any food. If I stay on time with the doses of B12 & molybdenum, I can eat a few things ok.|
Chronic Lyme, Bart., Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut dysmotility & non-specific inflammation, Lupus, Osteoporosis, etc.; G-Tube
Meds: Flagyl, Domperidone, Claritin, Andrographis & other herbs, homeopathy, supplements, etc.
|Posted By : SICKOFSULPHITES - 1/1/2013 4:08 PM|
|UKnewbie,am from UK,suffered with this for most adult life,my GP said probably nver find the casue.Well i di bout 4 years ago now went watch footy away 200 miles,so packed picky things to eat for journley,at destintion we had 2 hours in a bar,drank cider,way home samething,when arrived home started drinking cider again,started getting symptoms,red welts,torso,short of breath etc,noticed on tin of cider said added sulphites goggled it and hey presto me to a tea!! Went back to gp who reffered me on was d/xs with uticaria and angieodemia! but i know its sulfites.I elimnated as much as possible to start with,try organic where possible stayed that way bout 2 years,gradually started reintroducing foods,and am much better,as others have said i now take molybdenum (FROM AMAZON) and B12 complex and B12 i get them holland barrett when on offer!Was previous d/xs IBS even had colonoscopy (dont go there!!) now tolerate most things if dont go overboard.Do u drink wine?high in sulphites and avoid dried fruits esp. apricots.If u have any questions please ask will try to answer or others will on here.Good luck|
|Posted By : Jude03 - 1/25/2013 3:04 PM|
|I am new to this forum but am grateful to have found it. It is hard for people to understand sulfite sensitivity and what a huge effect it has on someone's life. |
I do want to respond to a post I read earlier that said to stay away from mixed spices but that most indivdual spices are usually okay -- I found out the hard way that this is not necessarily true. McCormick ground ginger lists "Ginger and sulfur dioxide" two ingredients and not thinking to check the label of the spice I went into a full blown asthma attack after eating the spice in gingerbread.
I have also learned that with regard to food labeling if the ingredient that may contain sulfites on a label is from a third party (and a lot of them are) the company that is responsible for the labeling does not have to include anything about sulfites on the l label even if it is higher than than then 10 ppm that is allowed. I have contacted many companies to ask them about such ingredients and they are quick to say they cannot guarantee if there are sulfites in the ingredient or how much. This makes label reading even more important.
|Posted By : Alcie - 1/25/2013 8:24 PM|
|Welcome to the forum Jude.|
Thanks for posting about ginger. You found a new one for me! I just read the label for pumpkin pie spices (mixed), and it's there too. I've been wondering why I react to pumpkin pies!!
Your gingerbread probably also contained a cup of molasses. If it was sulfured molasses, the tastiest kind, that was likely another trigger. Unsulfured molasses is available. The sugar has sulfite too, but not such a lot unless it's brown sugar.
Pepper can contain sulfites too because peppercorns are often roasted over charcoal in the processing.
Lemon juice in bottles contains more than 100 ppm sulfite, a very high level, but the frozen juice is clean. Tortillas on the shelf, not refrigerated often have sulfite on the label. It only has to be on the label if it's over 100 ppm.
Keep on posting, maybe start your own thread! We need something fresh started and maybe others will read and welcome you.
|Posted By : foxpd1 - 2/19/2013 11:46 AM|
|good morning all, |
might anyone know how long it will take for facial swelling to go away? this is terrible!
thanks so much.
Post Edited (foxpd1) : 2/19/2013 9:56:23 AM (GMT-7)
|Posted By : Alcie - 2/21/2013 11:00 AM|
|Welcome to the forum fox.|
You can post your own topic and get better response. This thread is pretty old. Just hit the post new topic button.
Is the swelling from a "true" sulfite allergy? Treatment like prednisone? Sulfites don't usually cause facial swelling on their own. Headaches and gastric reflux and arrhythmias are more common.
We'll be looking for your new post to welcome you to the forum.
|Posted By : Lady Alchemy - 3/12/2013 10:09 PM|
|Hello everyone. My name is Shannon and I also suffer from a sulfate allergy..|
I'm also 22 and suffer from depression, depersonalization, arthritis, bipolar... well I have a lot on my plate..
I've known about my Allergy for almost 3 years but that doesn't mean it has by any means been easy. My fiancée has been incredibly understanding and supportive but I can't shake the feelings I've been having recently of hopelessness ...
I'll be in the store with friends or even in casual conversation and they'll shake their heads and say that they couldn't deal with so many limitations. It's really been wearing on me lately (perhaps a good deal to do with my depression this time of year) and I'm feeling more and more hopeless.
My fiancée and I have been fighting more and more due to our current situation but I don't know how to make him understand how frustrated and hopeless I am... I've always been the kind of person that if you tell me I can't do something I'm going to and go over the top with it..
I've dealt with knowing I may not be able to walk due to my arthritis, possible meds for my mental issues (which I'm proud to say that I'm unmedicated but that might have to change soon) but the extreme limitations of this might actually be too much for me to handle. I hate having to live in paranoid fear and checking every lable.. its not fair..
I just don't see why it matters anymore!! I miss hot pockets, Cheetos, ans doing my own dishes!!
How do you guys deal with the feelings I'm having now? Any advice would be greatly appreciated because I've been feverishly looking for any hope of a cure or treatment because I can't keep living like this. Thank you everyone.
|Posted By : Alcie - 3/13/2013 5:57 PM|
|Welcome to the forum, Shannon.|
I can't advise about depression or arthritis, so I hope you will start your own threads (post new topic) on those forums. I can't really advise on anything because I'm not a doctor, only a patient.
Do you have the "true" sulfite allergy or the more common sulfite "intolerance?" My allergist lumps them together, but I get criticized for that and told I only have the sensitivity. Whatever. I don't care about labels unless they're on packages. :)
Do you have hives or other serious symptoms when you eat sulfites?
There's no cure for sulfite intolerance widely clinically accepted, although some people have reported relief with a wide variety of treatments from B12 etc. I hope you will read some of the other posts. See the search box at the top of any page.
I feel much better when I avoid processed foods, pork, wine and beer, vinegar except rice, corn starch, corn syrup, molasses, and bottled lemon juice (frozen is OK). Physically feeling better makes me feel mentally better. There are many lists of sulfite-containing foods online. I only pay attention to the foods which are high or listed on the labels - like tortillas.
I have grandchildren. You have a fiancee. We don't get to be hopeless. We have work to do - others who need us. I need a little tramadol for my various pains. It helps with my mood too, because it raises serotonin. If you're not seeing a doctor, please do. This is already way above my "pay" grade, which consists of taking the grandkids on walks, making them lunch and listening to them. If all I can do is listen, then I am useful, so I have to keep myself feeling well to do my job.
I hope you will post again on this forum with your own topic as this one is getting old. More people will read and answer.
Best wishes and looking forward to hearing from you again.