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Related Issues & Disorders

Discussions concerning the various associated health problems, including but not limited to pregnancy, sleep & weight issues.


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    • Scott Adams
      Your situation highlights a difficult but critical crossroads in celiac diagnosis. While your positive blood test (a high TTG-IgA of 66.6) and dramatic improvement on a gluten-free diet strongly point to celiac disease, the gastroenterologist is following the formal protocol which requires an endoscopy/biopsy for official confirmation. This confirmation is important for your lifelong medical record, can rule out other issues, and is often needed for family screening eligibility. The conflicting advice from your doctors creates understandable anxiety. The challenge, of course, is the "gluten challenge"—reintroducing gluten for 4-6 weeks to make the biopsy accurate. Since your symptoms resolved, this will likely make you feel unwell again. You must weigh the short-term hardship against the long-term certainty of a concrete diagnosis. A key discussion to have with your GI doctor is whether, given your clear serology and clinical response, would be getting a diagnosis without the biopsy.
    • Scott Adams
      Your experience of being medically dismissed for decades, despite a clear celiac diagnosis since 1994, is unacceptable. It is a tragic common thread in our community that the systemic failure to understand celiac disease leads to a cascade of other diagnoses—like SIBO, IBS, depression, and now the investigation of MS or meningioma—while the core autoimmune condition is neglected. The constant, severe flu-like symptoms and new neurological concerns are absolutely valid and warrant serious investigation for connections to celiac-related autoimmunity or complications like refractory disease. It is enraging that you must fight so hard to be heard. While I don't have a medical answer about MS or meningioma links, your instinct is correct: relentless symptoms require a specialist who understands celiac disease beyond the gut. Regarding the California proclamation, it is a symbolic advocacy effort; reaching out to the women mentioned may provide supportive community, but your advocacy with your local representative is the most direct action. 
    • trents
      @Peace lily, can you be more specific about which coffee manufacturers have told you that their coffee is probably not safe for celiacs? What you say is contrary to just about everything I find when I research this issue on the internet, even taking into account cross contamination. The exception seems to be when flavorings are added that may contain grain products made from wheat, barley or rye. This individual tested numerous coffees with a Nima gluten sensor and found no issues: https://www.goodforyouglutenfree.com/is-coffee-gluten-free/. There may also be an issue with cross reactivity for some celiacs:  https://www.glutenfreesociety.org/is-coffee-safe-on-a-gluten-free-diet/ . Keep in mind that when you ask questions of food companies concerning whether or not a product is gluten free or "safe for celiacs" you may be getting an ultra-cautious response due to the fact that they are careful to cover their backsides when the product hasn't been specifically tested for gluten content or is not being marketed as such. 
    • Caligirl57
      Excellent advice! Thank you, I will try that.
    • Caligirl57
      Thank you Knitty Kitty, I will get this checked out.  kind Regards, Caligirl57
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