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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. Guest HannahCal
    KaitiUSA

    Possible Diagnoses Of Cs

    • 5 replies
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  2. Spidey Sense
    gf4life
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  3. fritzicurls
    ianm
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  5. hannibehr
    Guest
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  6. audreyw
    CMWeaver
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  7. trying4faith
    kvogt
    • 10 replies
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  8. Guest ajlauer
    snoopylian

    When Do I Start Gluten Again?

    • 3 replies
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  9. mela14
    gf4life
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  10. jenvan
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  12. blue102
    Lesliean
    • 5 replies
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  13. audreyw
    Lesliean
    • 3 replies
    • 2k views
  14. Chrissy in England
    Fonda
    • 22 replies
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  15. gigimom
    KaitiUSA
    • 1 reply
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  16. TLymanP
    KaitiUSA
    • 2 replies
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  17. weigesm
    Guest
    • 6 replies
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  18. trying4faith
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  19. trying4faith
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    • 2.4k views
  20. granny
    celiac3270
    • 5 replies
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  21. Spidey Sense
    Carriefaith
    • 10 replies
    • 8k views
  22. wooya
    skbird
    • 6 replies
    • 2.3k views
  23. Guest BERNESES
    Guest

    Glutening Myself Again For Biopsy

    • 2 replies
    • 1.4k views
  24. shoefly21
    Rikki Tikki
    • 4 replies
    • 1.6k views
  25. pebs
    KaitiUSA
    • 20 replies
    • 4.6k views
  26. nobigideas
    KaitiUSA
    • 2 replies
    • 2k views
  27. minivanmama0300
    KaitiUSA
    • 7 replies
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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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