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Df gluten-free And Still Sick


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I have been glutn, dairy, casin, and alkalin free for a while now over 5 years and still suffer from migrains and stomach cramps. Recently I have not been able toeat my own pizza that I make myself. I will wake up after a few ours of sleep with migrain and vomiting the soy chees 12 hours later. I can't belive that I'm alergic to soy because I can drink the soy milk just fine. What is wrong with me?


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rosetapper23 Explorer

Many celiacs canNOT eat soy...and, besides, soy is not good for humans to eat. I could provide many citations here, but I don't want to type pages and pages of information on this topic. What you're describing, though, is possibly cross-reactivity. This happens when your body begins to identify other foods as containing gluten when, in fact, they don't. Sometimes if you avoid those foods for a few months, you can reintroduce them in the future with no problems. However, sometimes the offending food is forever considered gluten by your body and must be avoided for life. I've found that eliminating ALL grains, not just gluten-containing grains, helps tremendously. I began reacting to all grains, including white rice, about six months ago, and now I follow the Primal Diet and am doing better than I ever have in my life. For pizza crust, I use a combination of coconut flour and flaxseed flour...and nut flours can be used for other things. I haven't missed grains at all, and the additional healthy saturated fats have helped me to better absorb fat-soluble vitamins, something that I've had trouble with all of my life. Nutrition is a complicated topic and one that is made even more complicated by flawed information touted by federal agencies that are politically influenced by food manufacturers and pharmaceutical companies.

T.H. Community Regular

What are the ingredients in the pizza?

Do you use very much xanthan gum, guar gum, that sort of thing? Xanthan gum especially is known for causing gut issues in some people, and the gums in general seem to be an issue. I believe this is a reaction that can develop over time, so it could be a new thing.

Another curious cause of gut issues can be the dye annatto - it can be listed as annatto or naturel dye, and is in everthing from buns to frozen fries to orange cheese. This has a good list of some of the common suspects: Open Original Shared Link

Have you ever done an elimination diet or kept a food journal? Maybe you could find some connection. I started to have headaches after going gluten free as well, and mine turned out to be a reaction to certain pesticides, of all things. I never had this problem before going gluten-free, so it was a real surprise to develop it later!

There might be a contaminant in one of your foods, from gluten, dairy, or something like that. Have you double checked labels and gluten-free status of your food lately? We've been zapped by that ourselves. A product that was supposed to be gluten free, but not labeled as such, had a change in their factory production so that the gluten-free food started sharing a line with gluten containing food. We also had a product change their ingredients, where they added dairy to a dairy free cheese alternative! Don't know what the heck they were thinking people would eat it for, if it was dairy free but with added dairy. :blink:

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    • Aretaeus Cappadocia
      I'm not saying this is what you have, but your description reminds me of Morgellons, which are not very well understood. Here is a review from a reputable source. If it seems similar to your experience, you could raise this question with your Dr.  https://my.clevelandclinic.org/health/diseases/morgellons-disease
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      Hi Trent, no dairy. Other than good quality butter. I have been lactose free for years. No corn, sugar, even seasonings and spices. I don't eat out. I cook my own food.
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      @nancydrewandtheceliacclue, are you consuming dairy? Not sure if dairy is part of the carnivore diet.
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      Hello Russ! Thank you so much for your reply.  I have not had an antibody test done, ever, relating to gluten. Last year I had an allergy test done via blood draw (as my insurance wouldn't cover the skin test) but this was for pollen and grasses, not food. Even on the blood test I had extremely high levels of reactions to each allergen. Could this seasonal allergy inflammation be contributing to my celiac inflammation? I am so careful, there is no way I could ingest gluten. For example, couple of months ago I tried a cough drop that says it was gluten free. I checked ingredients, it seemed fine. But just taking one of those caused me to have nausea, vomiting, and the same extreme abdominal pain. Have you ever heard of anyone else having symptoms like mine after being diagnosed celiac and strictly gluten free? The last episode I had like this was yesterday, after I ate a certified gluten-free coconut macaroon with a little chocolate on it. I have eaten coconut and chocolate before with no issue,  so I didn't see how I could all of a sudden have such a strong response. 
    • Russ H
      The sensitivity of people with coeliac disease varies greatly between individuals. The generally accepted as safe limit for most people is 10 milligrams per day. This equates to a piece of bread the size of a small pea. Some people report that they are more sensitive than this, but others can very occasionally eat a normal gluten containing meal without reacting. I don't think that touching or throwing bread around would lead to you ingesting enough to cause a reaction. There are case reports of farmers with coeliac disease reacting to the dust from gluten-containing animal feed but they were inhaling large amounts of dust over a long period of time in barns. Perhaps you episodes are caused by a reaction to something other than gluten? Have you had your antibody levels checked to see whether you are still being exposed to gluten?
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