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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.


16,244 topics in this forum

  1. Serielda
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  2. Blu-1
    vincehh
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  5. Googles
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  6. nvsmom
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    Serielda
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  8. looking4help
    Serielda
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    Serielda
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  12. kmp86
    Celiacandme
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    Celiacandme
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  14. beth01
    GF Lover
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  15. tonalynn
    IrishHeart
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  16. cool-cucumber
    cap6
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  17. nme23
    icelandgirl
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  18. mbr22m
    nvsmom
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  19. Celiacsuffer09
    JaneWhoLovesRain
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  20. fetchfelix
    JodyM75
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  21. Serielda
    Scott Adams
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  22. Doorknocker
    starrytrekchic
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  23. ceceliac
    1desperateladysaved
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  24. WinterSong
    LauraTX
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  25. SMRI
    BoJonJovi
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  26. Serielda
    BoJonJovi
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  27. MegRie
    Adalaide
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  • Recent Activity

    1. - Scott Adams replied to Florence Lillian's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Gluten-Mimicking Proteins that can affect some Celiac individuals.

    2. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      2

      Second chance

    3. - Scott Adams replied to elisejunker44's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Schar's products contain wheat!

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  • Posts

    • Scott Adams
    • Scott Adams
      Thank you for sharing your experience, Florence. It’s important to clarify, though, that proteins like zein in corn, panicin in millet, and kafirin in sorghum are not considered gluten and have not been shown to trigger the same autoimmune intestinal damage seen in celiac disease. Some people with celiac disease do report symptoms with certain gluten-free grains, oats, or other foods, but that reflects individual intolerance or sensitivity—not a proven “gluten-mimic” effect that damages the small intestine. Certified gluten-free oats are considered safe for most people with celiac disease, though a small subset may react to avenin. If specific foods consistently cause symptoms for you, it makes sense to avoid them personally, but it’s helpful for readers to know that these foods are still medically classified as gluten-free and generally safe for the broader celiac community.
    • Scott Adams
      It’s true that awareness of celiac disease can vary among physicians, particularly outside of gastroenterology, and many patients end up educating their own providers. Reaching out to someone you trusted for 25 years makes sense if you felt heard and supported. That said, celiac disease management often benefits from a team approach, including a knowledgeable primary care provider and, when needed, a gastroenterologist or dietitian familiar with gluten-related disorders. Advocating for yourself is not unreasonable—it’s part of managing a chronic condition. If your current provider relationship isn’t working, it’s appropriate to seek care where you feel respected and properly supported.
    • Scott Adams
      I understand why that feels concerning. Some Schär products use specially processed wheat starch that has had the gluten removed to meet strict gluten-free standards (under 20 ppm in the U.S. and EU), which is why they can legally and safely be labeled “gluten free” for people with celiac disease. However, wheat must still be listed in the ingredients and allergen statement because it is derived from wheat, even though the gluten protein has been removed. For individuals with a true wheat allergy, these products are not appropriate—but for those with celiac disease, properly tested gluten-free wheat starch is considered safe under current medical guidelines. That said, it’s completely reasonable to prefer products made without wheat starch if that gives you greater confidence, and clearer front-of-package communication could certainly help reduce confusion for shoppers.
    • elisejunker44
      I have enjoyed Schar's gluten free products for years. However, some items Do contain Wheat and are not clearly labeled on the front. Indeed the package states 'gluten free' on the front, and it is not until you read the ingredient label that one see's wheat as the first ingredient. Some celiacs may be willing to take a chance on this 'gluten free wheat', but not me. I strongly feel that the labeling for these wheat containing products should be clearly labeled on the front, with prehaps a different color and not using the 'no gluten symbol on the front. The products are not inexpensive, and also dangerous for my health!
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