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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Soy Intolerance
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For those of you that are also reactive to soy, what do your reactions look like?

I'm starting to suspect that I'm reacting even stronger to soy than I am to gluten, and DANG does soy hide in a lot of places!

Does anyone have a soy-free chocolate recommendation? I can handle giving up wheat pasta, but CHOCOLATE?? <_<

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Ursa Major    4

I react to soy much the same as to gluten. And in fact, soy can destroy the villi as well.

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Mango04    11

My main soy symptom involves the swelling of my throat. It's kinda freaky. I also get all the GI problems from soy, almost as bad as gluten, but not quite - mainly in the sense that I can handle tiny amounts in chocolate and what not. But I can only handle the tiny amounts if I'm really good about cutting out all of the obvious sources.

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codetalker    12

It has just been about three months since I have been having major reactions to soy and you are definitely right. It does hide in a lot of places.

The reaction, at least for me, is completely different than for gluten. In fact, for awhile I was confusing it somewhat for acid reflux. The symptoms have included major difficulty swallowing, hoarseness, some slight neck swelling (a bit like mumps), shortness of breath (although I exercise regularly), weakness in my arms and significant weight loss. There has been some dehydration but that may or may not be related.

Right now, I am in a similar mode to what I experienced after going gluten free. I am OK for a bit, then the symptoms come back. Every single time, I have been able to track down soy in something I ate. The hardest so far were the mono- and di-glycerides in the ice cream I buy. The manufacturers web site listed the ingredients and the two were clickable. The link mentioned soybeans.

With most of the soy out of the way, I have noticed what may be a very slight reaction to canola oil. I switched from soy oil-based mayo to canola-based and have noticed slight neck symptoms after eating it.

Needless to say, I am getting tired of having to toss out food. This is worse than celiac disease. With a gluten accident, all I worried about was the little d. With difficulty swallowing and feeling like my neck would cramp up, I can't help but think about the big D.

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AndreaB    1

It is hard to give up chocolate. I gave it up for barley sweetened carob chips. Got tested for allergies because of my son's eczema. Am allergic to soy/wheat/dairy mainly. Now I can't have carob chips or chocolate chips because of soy lecithin. I can still have carob powder which is good mixed with peanut butter and vanilla rice dream frozen dessert. What I haven't researched yet is if all solid chocolate has soy lecithin in it. I was on a vegan diet. Whole family has moved back to meat eating. My two oldest are having major attitude problems with switching diets. They don't like meat. My oldest will tolerate very little but at least eats some. I never had any symptoms that I know of and would have continued on the vegan diet had I not had an allergy test done. I do have grass allergies so I guess I shouldn't be surprised about wheat. I practically live indoors during the summer. That should get better, hopefully by next year I'll be able to be outside more and enjoy it. And yes, as Ursala says soy is bad for the villi also. I have learned all of this recently, within the last month or so. :)

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kabowman    0

Enjoy Life Foods has soy, dairy, gluten, corn free chocolate chips that work great for that sweet tooth.

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Green12    2

Mostly I have GI symptoms, but for me the degree of reactivity I find depends on what other ingredients the soy is mixed with. If I have soy ice cream or baked goods with soy in them I get terrible GI symptoms (but it's the absolute worst with soy ice cream), so I suspect soy + sugar has synergistic effects in my body. If I have soy protein powder I get bad cyst type acne around the jaw line area.

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wolfie    1

My reactions to soy are much like the ones I have to gluten and lactose....gi....extreme gas and pain and sometimes consitipation, someimtes D. I only found this out when drinking soy milk to try to make up for not drinking cow's milk. I can tolerate some soy in baked products or chocolate in very small amounts.

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Mango04    11
If I have soy protein powder I get bad cyst type acne around the jaw line area.

me too!!!!!!!!!!!!!!!

I also forgot to mention that soy flour is the absolute worst. I really have a hard time breathing after I eat it.

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burdee    80

I am gluten, dairy and soy intolerant. After a year without chocolate (which contains both dairy and soy lecithin), I discovered those ELF chocolate chips, Ener-G Foods chocolate chips and ELITE bittersweet chocolate bars. Those bars are made in Israel and are kosher (no soy or dairy). I buy those at a local grocery store which has a fantastic kosher section manager who special orders those for me. I buy them by the case! :P

BURDEE

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I'm starting to suspect that I'm reacting even stronger to soy than I am to gluten, and DANG does soy hide in a lot of places!

Does anyone have a soy-free chocolate recommendation?

ALPROSE SWISS Dark Chocolate.

www.alprose.ch/

DAIRY and GLUTEN FREE - SOY FREE - Maybe CC with NUTS

Walmart has it hidden in the kosher isle.

Gray colored wraper, gold and white lettering. Perhaps they are old packaging? It's different then what apear in the euro site. They have a dark chocolate one stuffed with a hazelnut filling. To avoid dairy go dark chocolate. Since becoming a celiac I like dark chocolate better then milk or white chocolate its also yummy.

ALPROSE DARK CHOCOLATE BARS are about $2 or $3 a bar.

I am also a celiac that is reactive to SOY. I believe it is for me as bad as gluten, and the real reason for my serious thyroid problems. There are threads here pro and con-soy; we are living in a new time of discovery. We are so lucky we have found each other to spread the word to those that want a better quality of life.

Ursula -- I'm so happy to see you here!

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darlindeb25    5

I, of course, am gluten free for almost 5 yrs, 2 yrs ago I found I was soy intolerant, then that December I found I am corn intolerant, last summer I found I couldnt have tomato in any form or potato, and as of late, I find I can't tolerate starches. Now the soy lecithin doesnt bother me and I cant use margarine, but am thinking I may get away from it too. Soy and corn always constipate me, which sometimes I feel is worse then diarrhea. I do not eat any red meats any more and am getting really bored with chicken. Deb

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I, of course, am gluten free for almost 5 yrs, 2 yrs ago I found I was soy intolerant, then that December I found I am corn intolerant, last summer I found I couldnt have tomato in any form or potato, and as of late, I find I can't tolerate starches. Now the soy lecithin doesnt bother me and I cant use margarine, but am thinking I may get away from it too. Soy and corn always constipate me, which sometimes I feel is worse then diarrhea. I do not eat any red meats any more and am getting really bored with chicken. Deb

darlindeb -- You sound like me.

Not to get off topic, but did you read "dangerouse grains' the book? It talks about how many celiacs end up with secondary food intolerance/allergies over time. I wish we all knew that in the begining. And I know just want you mean darlindeb, but the book said we must rotate our diet and not eat the same things all the time. Its hard. Our body builds up a tolerance or something like that to those foods we always eat. I know what you are going through... Be well!

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Does anyone else find that they react to soy flour much worse than tofu etc? Soy flour (in biscuits/cakes etc) has a really quick reaction with me - I get some similar reactions to my coeliac ones - bloating/gas etc, but I think things like tofu/gluten-free tamari are OK...

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Mango04    11
Does anyone else find that they react to soy flour much worse than tofu etc?

YES! Definitely!

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alamaz    0

i react to soy anything including lecithins. i break out very badly and also my right side inflammations kick into gear. the whole food dark chocolate bars are soy free also.

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jnclelland    0
i react to soy anything including lecithins. i break out very badly and also my right side inflammations kick into gear. the whole food dark chocolate bars are soy free also.

My ears perked up at "right side inflammations" - can you tell me more about those? Soy makes me break out primarily on my right hand, and I've always thought it was bizarre that it's so one-sided.

Jeanne

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YES! Definitely!

Do you know any reason for this? It's an instant reaction for me - serious bloating and stomach pain almost as soon as I eat anything with soy flour in (annoying as most supermarket biscuits etc in the UK are made with soy flour - there are obviously alternatives but it makes it harder to just grab something from the 'Free From' section...).

Am presuming it must be something in the process to get the flour from the bean or something they add to it that makes it really indigestible/means it causes more problems in that form...?

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zkat    0

I hate getting soyed, as much as I hate getting glutened!

For me, it starts with very bubbly gas that I can feel moving through my system, then it is extremely foul smelling. I end up with bad diarrea. The gas usually last for about 2 days. My face always breaks out with systic acne and my back will start breaking out too.

I react to soybeen oil and lectins and it is in everything!

Kat.

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michelleL    0

I cannot tolerate soy at all. It's gotten so bad, I can't tolerate "regular" toothpaste. First, it was just hives. Now, I'm having attacks where I can't breathe. The most recent one, I really thought I was going to be a goner for sure. (I've renewed my rx for the EPI pen after that one...) And this was a drug reaction, in which I discovered that one of the ingredients of the medication is derived from soy oil "that has gone through so many processes there is no more soy left..." according to the pharmacist and drug lab. My foot. I've just returned from the allergist, who informed me that because I react to soy oil, it is not a soy allergy. Now, I am wondering if the reason I went into convulsions from taking Humalog (an insulin with glycerine) is that the glycerine is derived from soy. These reactions I have are not immediate. I always get hives 24 hours later, and then after a while of taking these things, I get the severe reactions. It takes 2 weeks for me to fully recover, after eliminating the culprit. I also lose weight, have severe bloatedness, and diarrhea.

I've done some research on the net, and they say that soy is not edible unless it's been fermented, as it is eaten in the East and only in small quantities. Canola oil is also the worst oil to eat; it is also inedible. The best 3 oils to eat are: olive, sesame, and one other I can't remember now. I'll post it when I remember what it is. These are oils that have been eaten for centuries, and proven to be edible.

Yea, soy is just as bad as gluten for me, and I think, too, it is even worse than the gluten.

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michelleL    0

I cannot tolerate soy at all. It's gotten so bad, I can't tolerate "regular" toothpaste. First, it was just hives. Now, I'm having attacks where I can't breathe. The most recent one, I really thought I was going to be a goner for sure. (I've renewed my rx for the EPI pen after that one...) And this was a drug reaction, in which I discovered that one of the ingredients of the medication is derived from soy oil "that has gone through so many processes there is no more soy left..." according to the pharmacist and drug lab. My foot. I've just returned from the allergist, who informed me that because I react to soy oil, it is not a soy allergy. Now, I am wondering if the reason I went into convulsions from taking Humalog (an insulin with glycerine) is that the glycerine is derived from soy. These reactions I have are not immediate. I always get hives 24 hours later, and then after a while of taking these things, I get the severe reactions. It takes 2 weeks for me to fully recover, after eliminating the culprit. I also lose weight, have severe bloatedness, and diarrhea.

I've done some research on the net, and they say that soy is not edible unless it's been fermented, as it is eaten in the East and only in small quantities. Canola oil is also the worst oil to eat; it is also inedible. The best 3 oils to eat are: olive, sesame, and one other I can't remember now. I'll post it when I remember what it is. These are oils that have been eaten for centuries, and proven to be edible.

Yea, soy is just as bad as gluten for me, and I think, too, it is even worse than the gluten.

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michelleL    0

The best 3 oils to use are: olive, sesame, and almond.

The worst 3 are: soy, canola and safflower. Insects won't eat any part of the rapeseed plant (from which "canola" comes from) - it is poisonous to them. It's like a natural pesticide.

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The Lovebug    0

I hadn't thought soy was a problem for me until I started taking a new brand of probiotic recently. Within a couple of hours, I was having bloating and cramping problems similar to those I had with gluten. I emailed the manufacturer and was told their capsules were free of wheat, dairy and gluten, but they do contain soy. So now I'm strongly suspicious that I am also soy intolerant.

Sue

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Mango04    11
Do you know any reason for this? It's an instant reaction for me - serious bloating and stomach pain almost as soon as I eat anything with soy flour in (annoying as most supermarket biscuits etc in the UK are made with soy flour - there are obviously alternatives but it makes it harder to just grab something from the 'Free From' section...).

Am presuming it must be something in the process to get the flour from the bean or something they add to it that makes it really indigestible/means it causes more problems in that form...?

I had always assumed soy flour must somehow have a higher concentration of soy protein, but I am just guessing.

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