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

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Posted 1/3/2012 2:42 PM (GMT 0)
Ila -
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:

http://holdthesulfites.com/

Let me know if there are any recipes in particular that you are interested in and I will try to whip something up!

Tracy
Posted 1/3/2012 2:51 PM (GMT 0)
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.
Posted 1/3/2012 3:02 PM (GMT 0)
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 1/3/2012 3:04 PM (GMT 0)
Hmm I might have to check those out. I love the Zinfandel's. :)
Posted 1/4/2012 12:14 AM (GMT 0)
I posted a few tips down in melnits' thread.
Posted 1/5/2012 3:10 PM (GMT 0)
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 1/15/2012 11:54 AM (GMT 0)
Hello everyone,
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.
Posted 1/17/2012 4:55 AM (GMT 0)
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?
Posted 1/17/2012 6:31 PM (GMT 0)
Faerie-
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 1/17/2012 10:17 PM (GMT 0)
Alcie
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 1/26/2012 8:31 PM (GMT 0)
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 1/28/2012 11:33 PM (GMT 0)
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 1/29/2012 12:05 AM (GMT 0)
 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 2/13/2012 2:18 AM (GMT 0)
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 2/13/2012 2:35 AM (GMT 0)
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 2/14/2012 1:01 AM (GMT 0)
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 2/14/2012 4:40 AM (GMT 0)
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 2/14/2012 4:51 AM (GMT 0)
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 2/14/2012 4:58 AM (GMT 0)
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 2/14/2012 3:10 PM (GMT 0)
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 2/14/2012 7:40 PM (GMT 0)
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 2/15/2012 12:49 AM (GMT 0)
mikemac -
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 2/15/2012 10:50 PM (GMT 0)
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 2/18/2012 12:09 AM (GMT 0)
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 2/18/2012 12:16 AM (GMT 0)
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..
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