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

Hi All

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

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

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

Hi Razzle

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.

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.

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

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!

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 

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.

tORQUOISE GIRL

TorquoiseGirl,

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

Many thanks

Dave

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

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

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. :)

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

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

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

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?

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)

yash888 -
Don't post your email! You're asking for spam.

Hi Alcie

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

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.