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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? What Else?
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9 posts in this topic

I self-diagnosed myself with celiac just under a year ago. I went on a gluten free diet, and for about 5 months I felt incredible. I suddenly had energy, my stomach aches were gone, and best of all I didn't need to sleep 15 hours a day. It was such a dramatic change that near strangers noticed a difference! However, for the last couple of months I've been feeling quite ill again. I have terrible burning stomach pain, like acid indigestion, that's bad enough that I had a colonoscopy and an endoscopy. Of course they both came up completely negative for anything, save the fact that they discovered I'm severely lactose intolerant (which I already knew).

Anyway, I'm beginning to think I have an intolerance to soy. I take in quite a bit of it between soy milk, ice cream, the gluten free baked goods, and coffee, so I've switched to coconut and almond milk and am trying very hard to cut soy out of all my food, which has been excruciatingly difficult. My question is what kind of intolerance symptoms do you guys have with soy? And how long do you think it'll take to get it out of my system? I've read that soy reactions can linger up to 4 weeks. I just need an idea of when I should consider the fact that it may be something else besides soy.

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I self-diagnosed myself with celiac just under a year ago. I went on a gluten free diet, and for about 5 months I felt incredible. I suddenly had energy, my stomach aches were gone, and best of all I didn't need to sleep 15 hours a day. It was such a dramatic change that near strangers noticed a difference! However, for the last couple of months I've been feeling quite ill again. I have terrible burning stomach pain, like acid indigestion, that's bad enough that I had a colonoscopy and an endoscopy. Of course they both came up completely negative for anything, save the fact that they discovered I'm severely lactose intolerant (which I already knew).

Anyway, I'm beginning to think I have an intolerance to soy. I take in quite a bit of it between soy milk, ice cream, the gluten free baked goods, and coffee, so I've switched to coconut and almond milk and am trying very hard to cut soy out of all my food, which has been excruciatingly difficult. My question is what kind of intolerance symptoms do you guys have with soy? And how long do you think it'll take to get it out of my system? I've read that soy reactions can linger up to 4 weeks. I just need an idea of when I should consider the fact that it may be something else besides soy.

As someone with multiple food allergies I avoid gluten, soy and limit dairy. After nixing gluten I was eating alot of products that contained soy, just as you probably have been and I soon found that soy gives me asthma. I'm not sure how long the effects linger and everyone's reaction will be different, but for me I noticed an improvement in my symptoms within a few days of removing it from my diet. The less I am exposed to the better. Watch out for soy lecithin, too. It's in numerous products like teas, candies and just about all commercial chocolate (as an emulsifier). You may want to consider talking to your physician about getting an ELISA blood test to identify any other food allergies. Be sure to keep reading food labels. Good luck and hope you feel better soon!

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My response to soy is very much like the reaction to gluten (typical gastrointestinal response), without any skin reaction though. Dairy affects me the same way. I hope you feel better soon.

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Thanks guys <3 It seems like no matter what I eat these days I get a tummy ache :(

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Once I eliminated gluten from diet I felt better, but only for a short while. I was getting migraines,D, achy joints, reflux, off balance, pain in my lower right quadrant. I was keeping a food log and as I tried to figure the puzzle out it seemed soy was causing me problems?

At first I could tolerate soy lethicin and some soy oil, but became more and more sensitive. Now my soy reactions are much worse than gluten. I can't tolerate even miniscule amounts, like tocopherol in vitamins, etc. Most recently I reacted very strongly to EggLand's Best eggs, which are fed a very soy heavy diet.

I had allergy testing and was negative. My allergist explained there are certain kinds of allergies, or intollerances that there's no good test for finding.

I'm still feeling the effects of soy from the egg I ate 4 days ago.

I suggest keeping a log of everything you eat and any reactions. If soy is your problem, be sure to look for it in any supplements you may take. I'm finding that soy is in SO many things..it's harder to avoid than gluten!

Good luck to you. I hope you can figure out what might be aggrivating your system.

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Ugh I didn't think about vitamins and stuff. I need to keep my food log regularly. Thank you :blink: !

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As far as I know, this is very common.

The same thing was happening to me and many other people who went gluten free. I have developed intolerance for: milk, dairy products, soy and soy products, oils, seeds, nuts, gluten free stuff (pasta, bread, etc.), corn, rice, potatoes, yams, eggs, canned good and a whole range of other foods.

Why? Here is my theory: for many years, I was gluten intolerant but my body was able to handle that. For four years following my surgery I have developed a full-blown celiac disease, without even knowing it. When the symptoms got so bad I thought I was dying from some mysterious illness, my new doctor (God bless him) told me to go gluten-free. And my body, that got so used to attacking gluten, suddenly had nothing to attack anymore. So it started searching for things that would be similar to gluten in structure so it could attack them. Grains and starches, as well as milk protein were the first targets. Even though they do not have gluten, they have proteins that are very similar in chemical structure. When I eliminated all possible causes, my body turned on itself and I developed a severe gastritis.

Right now I am on Paleo diet. A modified version of Paleo, I must add, since I only eat some vegetables and tubers (no nightshades, no onion family, no citrus fruit and no nuts or oils). However, I do not feel sick after meals and my body is not attacking itself any longer.

Good luck to you! And try eliminating everything but vegetables and grass fed chicken/meat/low-mercury fish, see how it works for you. No salt or any spices either. If you think it does not taste good - that is not true. I have finally discovered how good food actually tastes without all those additives, so it worked for me! Above all, listen to your body and what it is telling you.

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Hi Bubba's Mom, and everyone else.

I've also recently started to suspect soy as another problem food for me, along with dairy (likely Casein intolerance rather than lactose intolerance). I've been on the gluten-free diet for nearly 3 years, and have been much better. If I accidentally get into gluten, I get some gastrointestinal and other mild symptoms starting a couple hours later, and feel kinda bleh and sometimes mild anxiety the next day or two.

In the past year, though, I've been having problems with mild vertigo (most of an unsteady, rocking feeling, with sinus pressure and some nausea, that comes and goes for several days at a time). I've been tested for inner ear and balance disorders and so far all clear. In an attempt to manage the symptoms I've cut back on salt, dairy, and haven't been eating much soy for nearly two months now (cut out soy sauce and such mostly because of the salt content). Now when I eat anything with much salt or dairy my head goes all swimmy within minutes. I've been suspecting that soy might cause it as well. Tonight I cooked some tofu as a deliberate test of this theory. and yep, feeling kind of off now, though not necessarily as bad as with milk.

It seems that intolerance to milk and/or soy commonly goes hand in hand with Celiac disease. Vb, that's an interesting theory about our immune systems finding something similar to gluten to attack once we've cut it out of our diets. I've read that soy and casein have similar structures to gluten, though it's inconclusive whether they can also cause damage the same as gluten.

Could it also be that even having trace amounts of gluten is preventing our bodies from healing completely, hence the reactions to other similar foods?

In any case, I've also gone from feeling pretty great for a long time, thought i'd figured out the whole diet thing, and now it's been thrown into chaos again. My reactions to soy and dairy might not be bad yet, but could worsen as time passes. Maybe there's more to Celiac than just gluten? hmm.

Good luck to all trying to figure out what to eat and what to avoid.

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