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Celiac Disease Pre-Diagnosis, Testing & Symptoms

If you haven't yet been diagnosed this is the place you can discuss your symptoms and any test results that may indicate that you might have the disease.


19,295 topics in this forum

  1. Newhere19
    knitty kitty
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  2. Alibee
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    knitty kitty
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  5. Woodster991
    Scott Adams
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  6. nanny marley
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  7. Whyz
    knitty kitty
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  8. Brianne03
    Scott Adams
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    JA917
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  12. akacase
    Scott Adams
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    cristiana
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  14. Jtestani
    trents
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  15. Kathleen JJ
    RMJ
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  16. Ems10
    trents
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  17. Guest
    Scott Adams
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  18. CatLady15
    DebJ14
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  19. Juliana82
    knitty kitty
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  20. Vozzyv
    knitty kitty
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  21. Brianne03
    Beverage
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  22. MHavoc
    Scott Adams
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  23. Rosyjo11
    Scott Adams
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  24. Captain173
    Wheatwacked
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  25. ShRa
    Wheatwacked
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  26. Kristina12
    Wheatwacked
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  27. Nogluten4thisgirl
    Scott Adams
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  • Posts

    • Scott Adams
      Celiac disease is the most likely cause, but here are articles about the other possible causes:    
    • xxnonamexx
      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
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