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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.

Could I Be Casein And/or Soy Intolerant Too ?
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12 posts in this topic

I posted this in another section and then realized there was a thread already for other food intolerances. And within the 5 minutes of originally posting I have also learned that the villi are damaged the same way with casein and soy and due to that, biopsy results for celiac may be inclusive. what the heck???

Okay so I know I'm probably just being crazy but...

I'm debating getting the enterolab tests for casein, yeast, soy, etc. intolerances. I have been gluten free (i think and hope!!) for about 1 month and I still feel awful. Yesterday I thought my problems had to be because of all the cheese I had been eating. I went to a "medical nutrition therapist" who told me I should eat more low fat cheeses to help with my insulin resistence, assuming I wasn't lactose intolerant. But I decided to stop eating cheese as of last night for a little while to see if that helps. Today my stomach is still off and I'm so unbelieably foggy, which may be as result of my horrible insomnia attack last night, but whatever! So, today I think that maybe I could be intolerant to soy as well. I eat a ton of tofu and have a lot of soy milk. I try hard to like meat but I just can't get it down sometimes. Turkey and some chicken are usually okay but any other meat grosses me out. Aside from the cheese I had for breakfast yesterday I also had cheese flavored gluten free rice crackers and then for lunch I had a salad with soy dressing. Within only about 15 minutes of eating lunch I had what felt like an axiety attack or a drop in blood sugar. I was shakey, had trouble breathing and inhaled a handful of almonds because I thought I was about to pass out. Then I had to leave work early with horrible stomach pains. This morning for breakfast I had Nutty Flax cereal with walnuts and cut up banana (which by the way was delicious) with unsweetened Westsoy milk. For lunch I had homemade cucumber salad and humus. Now I feel sick. No bathroom problems just terrible heartburn/indigestion and a bad case of brain fog. Could I be intolerant to soy now too? If thats the case I'll only be able to eat veggies, fruits, and nuts, until i find out im allergic to nuts too!!!!

If you are casein and/or soy intolerant what happens to you when you ingest it? Do you have the same reaction as if you were glutened? Please help me!!! You can tell me if I'm being too much of a worrywart too! Thanx

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I don't think theres anything crazy about listening to your body. I just started this also. I had a day where I had some gluten-free soy sauce, and got sick. I thought I was being paranoid, but I really think I may have other allergies too. Okay I keep hearing entrolab. What is it?

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You sound like your a bit worried. I mention that because many celiacs have a problem with adrenal fatigue, and stress certainly doesn't help. So, first thing, relax!! :)

With damaged villi, you are more than likely lactose intolerant and should avoid dairy. In the beginning, you might want to avoid soy as well, but it might not be necessary. For me, I'm avoiding all but a very simple diet until I feel healed. I eat meat, chicken, fish, eggs, vegetable, fruit, rice, potatoes. With the exception of potatoes, very few people are allergic to any of these foods. I also buy organic as much as possible so that I put as little stress on my system as possible. But I feel really bad overall with a high level of fatigue.

I would simplify my diet if I were you to just the basics. Then after you're feeling better, add back in foods -- soy, processed gluten-free foods, etc. Then try dairy after several months.

This will take the stress of you, too, as you won't be constantly worried that something is bothering you. Get lots of rest, your body needs its strength to heal.

The only thing proven to have an effect on the villi is gluten, but casein and soy are questionable, it just hasn't been resesarched. If you simplify your diet, then add back those items, you will know very quickly what is causing your problem. I react very similarly to casein as I do to gluten. It's an undeniable reaction!

edit - I want to add, in support of what Ursula said on the other thread, glue is made from gluten, soy, corn, and dairy. All those can have a flattening affect on the villi and some docs think no one should eat any of them. I don't. But I will see if I can tolerate some soy and some corn ocassionally after I am healed.

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yes, I am a nervous wreck! But thank you. Your words of advice helped me yesterday too. I know I need to just calm down. I think I will try to stick with light foods for the time being. And I have always tried to eat as little processed non-organic foods in the past. And I thought I was so healthy!! Little did I know I was actually terribly malnurished. There are some really great organic markets by my house. I guess I just need to stick to those and some meditation. Thanks so much for your quick responses. The support this forum provides is so wonderful. :)

I don't think theres anything crazy about listening to your body. I just started this also. I had a day where I had some gluten-free soy sauce, and got sick. I thought I was being paranoid, but I really think I may have other allergies too. Okay I keep hearing entrolab. What is it?

I learned about Enterolab on this message board also and its very new to me too, thats why im debating it. Apparantly its a mail away testing center where they can test for food intolerances possibly through a stool sample (i think). They test for casein, soy, yeast, egg, gluten, and maybe some others. Its expensive but maybe worth it. I don't know though, I'm still figuring it out too. A lot of people on here seem to have gotten tests with them though. Let me know what you think... check out there site :

http://www.enterolab.com/

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I'm starting to wonder if Nutty Flax cereal is truly gluten free. The last couple times I had it, I got bad brain fog. I can't be certain it's the Nutty Flax, but it seems a super strange coincidence. There was a couple weeks in between the episodes.

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I'm starting to wonder if Nutty Flax cereal is truly gluten free. The last couple times I had it, I got bad brain fog. I can't be certain it's the Nutty Flax, but it seems a super strange coincidence. There was a couple weeks in between the episodes.

I have soy sensitivity (verified by Enterolab tests 8/06). I seemed to have problems every time I ate the Nutty Flax cereal which is supposed to be gluten free. So I did an allergy blood test which included flax. I did NOT react to flax on that test.

Then I noticed the lower side of the Nutty Flax box said "Made in a facility that also manufactures products containing soy and gluten. Strict manufacturing and sanitation practices are employed to prevent cross-contamination. This product is routinely batch-tested for gluten."

I concluded that even though they try to prevent cross-contamination, they also batch test for the presence of gluten in that cereal. HOWEVER THEY DID NOT SAY THAT TESTED FOR SOY. SO THE CEREAL COULD HAVE SOY CROSS-CONTAMINATION. I stopped eating that cereal and my symptoms disappeared.

If you are soy sensitive and abstain for awhile, you can react even more intensely the next time you ingest even a tiny amount from cross-contamination. Find another cereal.

BURDEE

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I have soy sensitivity (verified by Enterolab tests 8/06). I seemed to have problems every time I ate the Nutty Flax cereal which is supposed to be gluten free. So I did an allergy blood test which included flax. I did NOT react to flax on that test.

Then I noticed the lower side of the Nutty Flax box said "Made in a facility that also manufactures products containing soy and gluten. Strict manufacturing and sanitation practices are employed to prevent cross-contamination. This product is routinely batch-tested for gluten."

I concluded that even though they try to prevent cross-contamination, they also batch test for the presence of gluten in that cereal. HOWEVER THEY DID NOT SAY THAT TESTED FOR SOY. SO THE CEREAL COULD HAVE SOY CROSS-CONTAMINATION. I stopped eating that cereal and my symptoms disappeared.

If you are soy sensitive and abstain for awhile, you can react even more intensely the next time you ingest even a tiny amount from cross-contamination. Find another cereal.

BURDEE

Thanks for that post, Burdee. I'll stop eating it. Too bad, because it tastes really good with agave nectar. It's definitely not worth it, though. It affected my job yesterday.

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You're not alone! I have much of the same symptoms (trying to be gluten free since 4/27) and am also wondering about casein and soy. I have decided to cut out the casein, but I'm holding on to soy for now. I will let you know if I figure anything out. Keep me posted as well!

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If you are casein and/or soy intolerant what happens to you when you ingest it? Do you have the same reaction as if you were glutened? Please help me!!! You can tell me if I'm being too much of a worrywart too! Thanx

I don't get the same responses (except that gluten, casein & soy all constipate me). Gluten gives me brain fog & headaches, casein makes my sinuses run, and soy makes me break out. Egg upsets my stomach. According to Enterolab, I'm intolerant to yeast also, but I've never noticed a reaction.

Reactions really do vary from person to person. There is another thread just about different reactions to soy and I know there have been casein threads as well.

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Hi, I am new to the forum, but I wanted to add that I also seemed to have a glutened reaction when I ate Perky's Nutty Flax Cereal. Too bad, because it tasted pretty good.

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Strange. I eat Nutty Flax and don't have a problem. I guess I found it and tried it after my last post here some months ago and had forgotten this discussion.

It makes me wonder if people are reacting to what they put ON the Nutty Flax?

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You know, guys, after I popped my mouth off about Nutty Flax not being a problem, I was feeling bad and wondering, why don't I feel as good as I was for a while there? I realized that I went from never having this cereal, to having it occasionally, to having it every couple days. I looked at my diet/symptom journal. I also was having a brain fog experience which I have the day after glutening (not with soy or any thing else) and there was absolutely nothing I could see in the previous day it could have been. Except for, maybe, the Nutty Flax.

So I'm experimenting with not eating it. I'm going to start a thread devoted to just this and see what people have to say.

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