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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.


16,241 topics in this forum

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    • Scott Adams
      It’s absolutely worth bringing all of this to your GI appointment. The 2013 CT note about thickening in the second and third portions of the duodenum is especially important, since that area is directly involved in celiac disease and other inflammatory conditions, even if it wasn’t followed up at the time. The weak positive HLA-B27, joint pain, stiffness, numbness, and burning sensations could suggest an autoimmune or inflammatory process, which sometimes overlaps with celiac disease or other gut-related immune conditions. Your periods of neurological symptoms (balance issues, numbness, confusion), low vitamin D, and fluctuating levels despite supplementation are also relevant, as malabsorption can contribute to deficiencies and neurologic complaints. Even “normal” labs are helpful for pattern recognition over time. I’d suggest organizing your records into categories—GI imaging, autoimmune labs, vitamin/mineral levels, neurological evaluations, and symptom timelines—so your GI doctor can see the bigger picture. This kind of long-term pattern can be very useful in connecting dots.
    • trents
      Welcome to the celiac.com community @heart390! Genes connected with the development of celiac disease remain latent until triggered or activated by some biological stressor. The stressor can be many things and our knowledge in this area is incomplete. Suspects include viral infections, antibiotics, pesticides, preservatives and other harmful chemicals in the environment. The onset of celiac disease can happen at any stage in life. It is a long outdated misconception that gluten intolerance is a childhood phenomenon that you eventually outgrow. You use the term "gluten problems". What do you mean by that? Have you been formally diagnosed with celiac disease (aka, "gluten intolerance")? There is also NCGS (Non Celiac Gluten Sensitivity or "gluten sensitivity") for which there is not yet any testing available. It shares many of the same symptoms with celiac disease but is not autoimmune in nature and does not damage the lining of the small bowel. A diagnosis of NCGS depends on first ruling out celiac disease for which we do have tests. If you would seek testing for celiac disease, you must not begin the gluten free diet until all testing is done with or you will have invalidated the testing. There are two stages to the testing. The first stage involves a simple blood draw to check for certain antibodies produced by celiac disease. If the antibody testing is positive, doctors normally order an endoscopy with biopsy of the small bowel lining which checks for damaged caused by the inflammation associated with the autoimmune response. That is the second stage of diagnostic testing.
    • Jmartes71
      Thankyou very much.Our city will be holding a town meeting Tuesday and I really HATE speaking in public but im going to attempt to go and discuss celiac any heads ups?
    • heart390
      New to. this site!  After 70 years of eating everything - why would I suddenly start having "gluten problems" about 5 years ago???
    • knitty kitty
      Hello, @Aretaeus Cappadocia, My favorite source of B12 is liver.  😺 I react to nutritional yeast the same way as if I were glutened.  Casein, a protein in dairy, and nutritional yeast have protein segments that match certain antigenic protein segments in gluten.  The proteins in rice, corn (maize), and chicken meat have them as well.   Some people with Celiac might tolerate them without a problem, but I need to avoid them.  For those still having symptoms, cutting these out of our diet may improve symptoms. 
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