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Post Diagnosis, Recovery & Treatment of Celiac Disease

Discussions related to the recovery process after you've been diagnosed.


8,779 topics in this forum

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    Ennis-TX
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  • Posts

    • JD-New to Celiac
      Although diagnosed with celiac and dermatitis herpetiformis, I was curious about the celiac genetics and had that testing done on my own. Unfortunately, the lab does not explain the results and any doctor I have asked said I would need to see someone specializing in genetics. I was hoping someone out there might help me understand. Here is what came back and although I understand the HLA DQ2 and HLA DQ8, I wasn't sure what the variants mean and why they repeat twice. Someone said it was a double marker meaning both of my parents gave me copies. I also read having this combination makes my celiac potentially much worse. HLA DQ2 - Positive | HLA DQ8 - Negative HLA Variants Detected: HLA DQA1*05 and again HLA DQA1*05 HLA DQB1*0201 and again HLA DQB1*0201
    • JD-New to Celiac
      Understanding that normal is <15, I started off with 250+, then using the same lab it took two years to get to 11, the last test was 3. So, it jumped back up for some reason which is why I suspected gluten in my diet somewhere. I do not do dairy, eggs, oats, or soy. I am vegan and gluten free, and take numerous supplements with the help of this forum.
    • Scott Adams
      I just want to post this new study here--it seems that for those who don't recover on a gluten-free diet may be in this group: https://www.science.org/doi/10.1126/scitranslmed.adp6812
    • Scott Adams
      Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful:    
    • Scott Adams
      It does seem like brushing would be needed, and like anything else, a little daily exposure can lead to serious issues for celiacs.
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