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Anyone else with a sulfite intolerance? I would love to hear from you!

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Posted 10/23/2007 9:05 AM (GMT -7)
Hi All

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.

Thanks

 

Posted 10/24/2007 5:24 AM (GMT -7)
Hi,

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.webmd.com/allergies/guide/sulfite-sensitivity
http://allergies.about.com/od/foodallergies/a/sulfites.htm
http://www.beatcfsandfms.org/html/Sulfides.html
http://www.allergycapital.com.au/Pages/sulphites.html
http://www.med-library.net/content/view/453/41/
http://members.aol.com/nosulfites/
http://www.babyandkidallergies.com/sulfites.php
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,
-Razzle

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 10/24/2007 6:07 AM (GMT -7)

Hi Razzle

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.

turquoisegirl

Posted 10/24/2007 3:41 PM (GMT -7)
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,
-Razzle

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 10/25/2007 11:28 AM (GMT -7)
Hi Razzle

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

croaky voice

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

turquouisegirl

 

Posted 8/29/2009 5:26 PM (GMT -7)
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 12/14/2009 10:42 AM (GMT -7)
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 12/15/2009 5:16 PM (GMT -7)
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.

Joy
Posted 12/23/2009 1:52 PM (GMT -7)
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!

Kate

Posted 3/1/2010 11:24 AM (GMT -7)
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
  • bloating
  • 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 3/1/2010 2:45 PM (GMT -7)
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 3/18/2010 8:11 PM (GMT -7)
tORQUOISE GIRL
Posted 3/18/2010 8:12 PM (GMT -7)
TorquoiseGirl,

Could you please share with us the 20 foods you can eat?

Many thanks

Dave
Posted 3/23/2010 4:03 PM (GMT -7)
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.

Take care,
-Razzle

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 8/20/2010 9:26 AM (GMT -7)
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 8/20/2010 2:46 PM (GMT -7)
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.
Joy

Problems too numerous to name. :)
Posted 8/21/2010 7:32 AM (GMT -7)
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.
Alcie

 

 

Posted 8/21/2010 11:32 AM (GMT -7)
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 8/21/2010 5:51 PM (GMT -7)
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.
http://www.housemouse.com/sulfites.htm

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.
Alcie

 

 

Posted 8/24/2010 3:40 AM (GMT -7)
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 12/16/2010 11:48 AM (GMT -7)
To Ashleyboo

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.



thanks



To Turquoisegirl

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 12/16/2010 12:52 PM (GMT -7)
yash888 -
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!

The best website, with links is: http://www.readingtarget.com/nosulfites/   (formerly hosted by AOL)

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 12/16/2010 2:00 PM (GMT -7)
Hi Alcie

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.

thanks,

 

Posted 12/16/2010 7:58 PM (GMT -7)
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?
Alcie

 

 

Posted 12/19/2010 2:44 PM (GMT -7)

Hi Alcie

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.

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