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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 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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57 posts in this topic

First, I just want to thank all of you for how much you help each other! I've been a member for over a year, but haven't posted yet.

I've been gluten free for almost two years now, and in that time, I guess a lot of my new food choices ended up having large amounts of soy in them. I'd always had some soy here and there, maybe a Starbuck's coffee with soy milk in it, a bit of tofu, but that's it. (I'm also lactose intolerant.) Anyways, reading this post, well, finally made me post! I had no idea soy could affect your skin so greatly! The last year or so especially, I keep getting an acne like rash/small hives around my jawline, a bit on my neck, and upper chest. As soon as I got off soy milks and yogurts, it started to clear up. But I still have some of the acne rash and hives, it's been one month since I've had soy products, so I thought. Didn't realize that some Crystal Light drink mix had soy lecithin in it! Anyways, for those of you who have skin reactions to soy as well as GI symptoms, how long did it take for your skin to completely clear up, and stop itching?? My stomach seems to be doing immensely better, but my skin is still quite itchy, and I'm sick of antihistamines, not sure if I should just "let it work itself out" type of thing. Do any of you remember how long it took for your skin to clear up??

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Hi,

I am starting to think I am soy intolerant too... five years ago an allergy test to soy came back slightly positive and my doctor said because it was so slight to just go off gluten to see if it made a difference... which did work for a while.. but now symptoms are starting to come back and the only thing I can think of is soy. I wouldn't mind trying to go soy free for a few weeks to see if that helps.. but my question is.. what do you eat? haha I'm having such a hard time finding soy intolerant websites/discussion forums like I can for Celiac/gluten free. Does anyone know of any websites? Or have any suggestions? Thanks!

-Nina

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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 am guessing it has to do with the concentration of soy proteins.

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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.

I just saw this...are you sure you're having a reaction to soy? Do you ever have these symptoms the rest of the time? What you desribe sounds a lot like thyroid disease. Do you have a goiter?

I would see a doctor to get an Epi pen if you have any kind of reaction in which your throat swells. This sounds more like a potentially dangerous allergy than intolerance.

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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

Apparently this is a lesser known "normal" side effect from starting probiotics. I also had the same thing happen to me, and I am not soy intolerant. Cut out the probiotics for a while. If you react to foods with soy, then you know that is also a problem for you.

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Hi,

I am starting to think I am soy intolerant too... five years ago an allergy test to soy came back slightly positive and my doctor said because it was so slight to just go off gluten to see if it made a difference... which did work for a while.. but now symptoms are starting to come back and the only thing I can think of is soy. I wouldn't mind trying to go soy free for a few weeks to see if that helps.. but my question is.. what do you eat? haha I'm having such a hard time finding soy intolerant websites/discussion forums like I can for Celiac/gluten free. Does anyone know of any websites? Or have any suggestions? Thanks!

-Nina

If you had an allergy test that even gave a hint of soy intolerance, I'd sure give it a try!! Honestly, at first, I was really overwhelmed with it all. No gluten, lactose, or soy for me, and the only meat/poultry I eat is chicken. So, right now it's eggs and gluten free toast/cereal for breakfast with fresh fruit, then lunch meat with some Kraft cheese (most Kraft cheddar and swiss is lactose free. If you read under the ingredients, it will say "contains 0gr of lactose per serving.") more fruit and veggies, a Lara protein bar, then dinner usually is BBQ chicken, or any kind of chicken; with brown rice, quinoa, and salad and veggies. For snacks, it's usually some fruit, or sugar free Jello Pudding cups, or nuts. Or I cook a lot of Mexican type foods, with corn products. I love cooking tostadas with chicken and black beans, with some fresh salsa, or ground chicken with Ro-Tel for tacos. Honestly, it's not as bad as I thought it was going to be!! Good luck, I hope you feel better!

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If you had an allergy test that even gave a hint of soy intolerance, I'd sure give it a try!! Honestly, at first, I was really overwhelmed with it all. No gluten, lactose, or soy for me, and the only meat/poultry I eat is chicken. So, right now it's eggs and gluten free toast/cereal for breakfast with fresh fruit, then lunch meat with some Kraft cheese (most Kraft cheddar and swiss is lactose free. If you read under the ingredients, it will say "contains 0gr of lactose per serving.") more fruit and veggies, a Lara protein bar, then dinner usually is BBQ chicken, or any kind of chicken; with brown rice, quinoa, and salad and veggies. For snacks, it's usually some fruit, or sugar free Jello Pudding cups, or nuts. Or I cook a lot of Mexican type foods, with corn products. I love cooking tostadas with chicken and black beans, with some fresh salsa, or ground chicken with Ro-Tel for tacos. Honestly, it's not as bad as I thought it was going to be!! Good luck, I hope you feel better!

Thanks so much!!

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Soy is evil :/...it gives me terrible diarrhea, in fact one that lasts longer than if i get glutened. yesterday, i had minor surgery and the anestesia they put in through an iv worked "wonders" on my stomach today if youu know what i mean :/

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This is the first time I have posted here. I read the comments by everyone regarding the soy intolerance. I have soy, lactose and gluten intolerance, also. Thanks for the info someone posted regarding the book "Dangerous Grains". I sincerely appreciate the information and have passed it on to my sister and my mother (both are Celiac's).

I also think that my soy intolerance is much worse than my gluten intolerance, even though both are horrible. I immediately become unbelievably ill after consuming certain amounts of soy. I have been so severely ill from soy that I have even thrown up having to pull over two places on the side of the road within minutes of each event to do so. Then, I had to immediately go into a store to use their bathroom because immediately I became severely ill and then when I left the bathroom I passed out in the store and was taken by ambulance to the Emergency Room. I was so upset.

The second time I tried to attempt drinking the same drink, I had a couple of sips and was immediately violently ill again. I have noticed my illness is not as immediately intense with gluten, however, I end up extremely malnourished with so many nutrients dropping dangerously low in my blood work over a longer span of time. But, sometimes I feel like I am drugged and going to pass out at times after consuming gluten (which I try to definitely avoid at all costs). I also have the typical GI events with gluten too. That is how the doctors ended up testing me for Celiac's disease in the first place.

Closing, I would like to thank everyone for their posts. You have really helped me with the information posted here. I noticed the connection with the soy and lactose and was very pleased with the posts regarding it. It put me at ease a bit as sort of a confirmation that my assumptions are probably correct about it. They are probably connected in some way.

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I have just tested soy (and peanut) by eliminating them for a week, and then doing a challenge. Both had similar reactions, like going through cold symptoms, congestion, sore throat, asthma and that type of thing. Soy lasted over a day.

So I will eliminate these for a month and see what happens.

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Soy gives me migraines, makes me very sleepy and lethargic, and just overall makes me feel ill. I do okay with a little soy milk or some soy lecithin in something, but with anything concentrated like soy protein powder or a veggie burger it is really obvious. I mostly try to stay away from soy altogether (except for a soy chai latte once in a while or something with soy lecithin in it).

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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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chocolate skittles made by Mars are soy and gluten free but I have to eat just a few as I am lactose intolerant. But very good.

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chocolate skittles made by Mars are soy and gluten free but I have to eat just a few as I am lactose intolerant. But very good.

I don't think they contain lactose.

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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.

Do olive, sesame or almond have high flashpoints? I've been using a lot of canola.

Thanks.

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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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When I read your post, I almost fell off my chair. Did you day that you switched to barley based carob chips? Barley has gluten.

Before I realized that I am gluten sensitive, I suspected wheat as a cause to my symptoms and was seeking out items made with only rye. I had found a really nice cracker made with only rye and salt. Well after the gluten sensitivity test results, I had to give up my crackers because rye and barley have gluten too.

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I bloat and become constipated with soy just like with gluten.

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This page talks about carbohydrates in soy that can't be digested by the human gut. So they cause GI sypmtoms when the bacteria get happy with all that carbohydrate to eat. Seems this perosn wrote a book on it. I haven't read the book.

http://www.thewholesoystory.com/index.php?pageID=Excerpt3

Quote below from

"THE WHOLE SOY STORY" by Kaayla T. Daniel, PhD

"THE TWO STOOGES: RAF AND STACH

The chief culprit, as with all beans, is the oligosaccharides in the carbohydrate portion. The word oligosaccharides comes from oligo (few) and saccharides (sugars). The best known oligosaccharides in beans are raffinose and stachyose. They require the enzyme alpha-galactosidase to be digested properly. Unfortunately, humans and other mammals do not come so equipped."

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When i eat soy, I get this feeling in my stomach like its just sititng there not moving and I get a weird taste in my mouth. I seem to be quite sensitve to it. I went to Starbucks one day, and my friend had a soy latte before me. They wiped the thing down then made mine. I had "that" stomach ache that afternoon and I couldn't figure out why but realized I must have had some little bit of soy.

BLECH.

I have had allergy testing for soy and it was neg so I'm not sure what is up with that.

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If you are using Canola Mayo be careful. I just got an email from Helmann's confirming that "natural flavoring" is soy! Explains why I was having reactions after eating just a little of the mayo that I thought was safe.

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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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?? <_<

Not only can I no longer have gluten I have also had to eliminate dairy. I tried soy products and found they were an irritation to my system also. There is a company called turtle mountain www.turtlemountain.com and they have a frozen dessert as well as yogurts made from coconut milk. One of their flavors is chocolate and it is very good. :P

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I find that soy is toxic. I have night sweats. Swelling in my left thigh and rash that resembles and feels like a third degree burn across my skin when the fever leaves my body the skin across my thigh peels away. I can't breathe and I have inflammation in my intestines. I haven't had soy in 4 months and I was doing fine. Last night my husband made homemade french fries with vegetable oil. That night I had night sweats. Today I read the vegetable oil bottle and the ingredients read soybean oil (only). I only had 10 fries. I read every label and I will not eat any thing that maybe processed in a facility that processes soy. Soy is in everything and it's disguised in many forms. I find that it is extremely dangerous.

blueeyedvegan

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damn these gluten free cookies have soy and this chocolate bar too

Soy and Soy Lecithin

Should I still eat it

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