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Genetic Testing For Celiac - Questions


marie06

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marie06 Rookie

Hello, I have been gluten-free since 6/5 and 99% Casein free as well since then. I had an endoscopy done on 6/5 to see why I had been nauseous for almost 2 years and I asked the GI doc to do a biposy. He did 1, and said it was negative for Celiac (but note, only one sample was taken). 6 weeks later I went to be tested for food allergies and the doc did a Celiac blood test which also came back negative. HOWEVER, I have definitely seen a huge health improvement from going gluten-free and so I plan to stick with it. Now, my questions lie in the genetic testing that can be done for Celiac:

1) how accurate are these tests? I know that they can biopsy spots w/o damaged villi, and you could still have Celiac....and I know blood tests are not always accurate (esp when gluten-free for awhile). So what is the accuracy of the genetic testing?

2) is there a 'better' genetic test lab than another?

3) I am assuming a genetic marker will show up regardless of how long you have been gluten-free?

4) any other thoughts to share with regard to the above?

The reason I am concerned is mostly for my daughters sake. She is not showing any Celiac symptoms, but if she has a genetic marker for this, I think it would be good to know (OR if she DOESNT have the marker, I can stop worrying if she might get it). I call her my little "Carb-ovore" because she loves bread and pasta, would live on that if I let her. But she has no health issues that we know of and is fine on the growth chart, (actually 90%ile).

It would also be somewhat helpful for me to know if I am CELIAC or just Gluten Intolerant. Thanks in advance!


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ShayFL Enthusiast

I used Enterolab and Kimball for genetic. This explains it well:

https://www.celiac.com/articles/21567/1/Ten...ting/Page1.html

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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