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Post Diagnosis, Recovery & Treatment of Celiac Disease

Discussions related to the recovery process after you've been diagnosed.


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  • Recent Activity

    1. - MogwaiStripe posted a topic in Dermatitis Herpetiformis
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      Dermatitis Herpetiformis Cleared up With EpiPen, etc.

    2. - Dr. Gunn replied to MicG's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      Test interpretations

    3. - trents replied to MicG's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      Test interpretations

    4. - Dr. Gunn replied to MicG's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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  • Posts

    • MogwaiStripe
      I had to rush to the hospital last week due to anaphylactic shock from taking a dose of an antibiotic. Received EpiPen, steroids, antihistamines, zofran (all injected/IV). When I woke up the next day, ALL of the rashes I've had that started since going gluten free were cleared up. EVEN THE dermatitis herpetiformis was gone. Has anyone else experienced this or happen to know why that would happen? The meds they gave me were all meds that I've taken to try to resolve the rashes, but they never worked in pill form. I'm wondering if it the addition of the epi that helped, it if injected steroids and antihistamines were what did the job.
    • Dr. Gunn
      Exactly! Negative genetics can rule out celiac disease with close to 100% certainty. It takes tTg antibody testing and biopsy confirm the diagnosis in a genetically susceptible individual. 
    • trents
      What Dr. Gunn states is essentially true. It is a rule out measure. But be aware that to possess either of the two primary genes that have been identified with celiac disease (or both) doesn't necessarily mean that you have or will develop celiac disease. Almost 40% of the general population carries one or both but only about 1% of the general population will develop active celiac disease. It remains latent until triggered by some stress event which may or may not occur. So, there is a genetic component to celiac disease but there is also an epigenetic component. 
    • Dr. Gunn
      Have you had celiac genetic risk testing? A celiac genetic test is accurate with or without gluten in your diet. If you don't carry the celiac risk genes you can effectively rule out celiac disease for life. 
    • Scott Adams
      Based on those results alone, it’s not possible to say you have celiac disease. The test that is usually most specific for celiac, tTG-IgA, is negative in your results, and the endomysial antibody (EMA) is also negative, which generally argues against active celiac disease. However, your deamidated gliadin IgA is elevated, and your total IgA level is also high, which can sometimes affect how the other antibody tests behave. Another important factor is that you were reducing gluten before the test, which can lower antibody levels and make the results less reliable. Because of that, many doctors recommend a gluten challenge (eating gluten regularly for several weeks) before repeating blood tests or considering an endoscopy if symptoms and labs raise concern. It would be best to review these results with a gastroenterologist, who can interpret them in context and decide whether further testing is needed.
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