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Parents, Friends and Loved Ones of Celiacs

Discussions among parents of kids or babies with CD. Non-celiacs can discuss their experiences dealing with a friend or loved one with the disease.


7,184 topics in this forum

  1. jen2be2
    Juliet
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    • 1.7k views
  2. jen2be2
    Canadian Karen
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  3. sarahelizabeth
    jen2be2
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  5. janelyb
    Lisa
    • 12 replies
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  6. ptkds
    squili
    • 7 replies
    • 1.7k views
  7. momof2sn
    Kassie

    Muffins

    • 12 replies
    • 3.1k views
  8. Guest maddiesmom
    Lisa

    Loaf Of Bread

    • 1 reply
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  9. sarahelizabeth
    JennyC
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  10. Amanda Thomas
    Pacer
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  12. janelyb
    Nantzie
    • 10 replies
    • 2.6k views
  13. Guest GrimTribe
    jen2be2

    Bood Test Results

    • 4 replies
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  14. momof2sn
    • 6 replies
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  15. Pacer
    Jodele
    • 19 replies
    • 3.2k views
  16. pedro
    Q1821
    • 3 replies
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  17. ptkds
    • 0 replies
    • 1.2k views
  18. Guest lorlyn
    Juliet

    Getting Overheated

    • 4 replies
    • 1.7k views
  19. wolfie
    JennyC
    • 22 replies
    • 4.1k views
  20. sclark9602
    Juliet
    • 4 replies
    • 1.7k views
  21. Pacer
    edgeyveggie
    • 17 replies
    • 3.6k views
  22. cdfiance
    CarlaB
    • 9 replies
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  23. familyfirst
    mcsteffi
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  24. sillyactsue
    Nikki2003
    • 3 replies
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  25. momof2sn
    dally099
    • 1 reply
    • 934 views
  26. janelyb
    FeedIndy
    • 5 replies
    • 2.1k views
  27. Guest maddiesmom
    Juliet

    Hot Dog/hamburger Buns

    • 2 replies
    • 1.3k views
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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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