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Coping with Celiac Disease

Share stories, techniques, and information to help others deal with the disease and the gluten-free diet.


16,249 topics in this forum

  1. clnewberry1
    mef
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    dilettantesteph
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    Carolyn the conqueror
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  17. gluten Tag
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  21. clnewberry1
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  22. GlutenGuy36
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  23. MaryJones2
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  • Recent Activity

    1. - Russ H replied to nancydrewandtheceliacclue's topic in Introduce Yourself / Share Stuff
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      Celiac flare years after diagnosis

    2. - Aretaeus Cappadocia replied to Jmartes71's topic in Dermatitis Herpetiformis
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      Skin issues

    3. - nancydrewandtheceliacclue replied to nancydrewandtheceliacclue's topic in Introduce Yourself / Share Stuff
      5

      Celiac flare years after diagnosis

    4. - trents replied to nancydrewandtheceliacclue's topic in Introduce Yourself / Share Stuff
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      Celiac flare years after diagnosis

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  • Posts

    • Russ H
      HI Nancy, In your first post, you said that you were diagnosed by biopsy and blood test - this is what I was referring to: the blood test is for antibodies that are made during active disease. After a period on a strictly gluten-free diet, the antibodies return to low level. It is a good way of checking for accidental exposure if symptoms persist. If you are reacting to foods that don't contain gluten, you may be reacting to something else. Alternatively, a condition called SIBO is common in people with coeliac disease, where there is an overgrowth of bacteria in the small intestine. This can be tested for with a simple breath test. The main treatment is with a course of antibiotic. Small Intestinal Bacterial Overgrowth (SIBO)
    • 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
    • nancydrewandtheceliacclue
      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.
    • trents
      @nancydrewandtheceliacclue, are you consuming dairy? Not sure if dairy is part of the carnivore diet.
    • nancydrewandtheceliacclue
      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. 
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