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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.


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    jknnej

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  • Recent Activity

    1. - melthebell replied to melthebell's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Persistent isolated high DGP-IGG in child despite gluten-free diet

    2. - trents replied to melthebell's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Persistent isolated high DGP-IGG in child despite gluten-free diet

    3. - melthebell posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Persistent isolated high DGP-IGG in child despite gluten-free diet

    4. - trents commented on Scott Adams's article in Winter 2026 Issue
      4

      Why Celiac Diagnosis Still Takes Years—and How to Change That

    5. - Jmartes71 replied to Known1's topic in Gluten-Free Foods, Products, Shopping & Medications
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      What would you do - neighbor brought gluten-free pizza from Papa Murphy's

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    • melthebell
      Thanks very much for taking the time to write this. I have been pretty worried so appreciate reading any advice. Yes, the endoscopy will include a biopsy, and we have hopefully found a good pediatric gastro to guide us through it all.  Will also run the HLA typing - I have the swabs ready to go.
    • trents
      Welcome to the celiac.com community, @melthebell! I certainly would have a biopsy repeated as it has been 5 years since the first one. You mentioned he was scheduled for an endoscopy but make sure a biopsy is also done. It's possible he, like you are, is a "silent" celiac where the damage to the intestinal mucosa happens very slowly and can take years to manifest to the point of being detectable and where symptoms are minimal or absent. At 10 years old, his immune system may not be mature enough het to trigger the usual IGA responses that the IGA celiac tests are designed to detect.  I would also have genetic testing done to confirm that he has or doesn't have the potential to develop celiac disease. The genetic profile can also offer insight into the type of celiac disease a person will develop if they ever convert from latent to active. Take a look at table 2 under the section "Types of Celiac Disease" in the article found in this link: https://pmc.ncbi.nlm.nih.gov/articles/PMC9980758/  Genetic testing is available from 3rd party labs. I think you just have to send in a cheek swab sample.
    • melthebell
      Hello community; it's nice to have found you. I am a 42 year old biopsy confirmed celiac. I have had it since I was 18. Well managed on a gluten free diet. No idea if I have the gene (presume I do) as never tested. Diagnosed as was anaemic and had a high celiac market (can't recall which), and a positive biopsy. Asymptomatic. Given this, I regularly test my two children. My eldest is the child in question. First tested at age 5 due to slight anaemia. Everything negative except for a slightly high DGP IGG (slightly elevated at 25). Not IGA deficient. Did a biopsy with a pediatric gastro, was negative. Next test at age 8. Everything once again negative, high DGP IGG at 116 U/ml this time. Living in a country now with no celiac knowledge so decided to whack him on a gluten-free diet and see how he goes. Next test at age 9 after a year on gluten-free diet. Everything once again negative, high DGP IGG at 174 U/ml this time! On a gluten-free diet. Final test was a week ago at age 10, on continued gluten-free diet. Once again a positive DGP IGG, this time over 250 U/ml. On a gluten-free diet. what the heck is going on with my kid? We have seen a pediatric gastro via telehealth, who was equally puzzled and suggested doing a gluten challenge and an endoscopy, which we have schedule for end of April. Kid is otherwise fine. Energetic and growing well. No significant gastrointestinal symptoms. Has anyone encountered something like this before?
    • Jmartes71
      Domino's and Mountain Mike also has glutenfree pizza.However the issue is the cross contamination. Not worth a few minutes of yum yums i n the taste buds with a painful explosion later.
    • Scott Adams
      I don't recall seeing "many people here recommending RO water," but reverse osmosis (RO) water is water that has been purified by forcing it through a very fine membrane that removes dissolved salts, heavy metals, fluoride, nitrates, PFAS, and many other contaminants. It is one of the most thorough household filtration methods available and can be especially beneficial in areas with well water or known contamination concerns. While RO systems also remove beneficial minerals like calcium and magnesium and may produce slightly “flat”-tasting water, most dietary minerals come from food rather than drinking water, so this is not usually a health concern for most people. Overall, RO water is very clean and safe to drink, and it can be a smart option where water quality is questionable, though it may not be necessary in areas with well-tested municipal water.
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