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Please Give Me Advice


miloandotis

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miloandotis Apprentice

My doctor ordered the test for me, but he does not know for how long I need to go back on to a gluten diet. I have been off for just over a week. Does anyone know how long I need to eat gluten before I go in to get tested?


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Amyleigh0007 Enthusiast

I don't think one week gluten free is long enough to skew test results. I would just begin eating gluten again until your testing is complete.

ang1e0251 Contributor

A week is a short time. I agree if you gluten load you could test in the next week or two. Nice of your dr not to offer to research it for you.

gfb1 Rookie
My doctor ordered the test for me, but he does not know for how long I need to go back on to a gluten diet. I have been off for just over a week. Does anyone know how long I need to eat gluten before I go in to get tested?

it depends on the test and your personal biology.

your topic post says something about "anti tissue transglutaminase tests" -- is this the ONLY test or is it the entire celiac panel??

it is entirely possible, based on your diet (i.e., how much gluten you usually consume prior to being gluten-free), how long you've been having celiac-like symptoms, and the degree of intestinal damage -- for some blood tests that might have been positive, to be negative.

ravenwoodglass Mentor

Do keep in mind also that there are some of us who will show a false negative on the blood tests even on a full gluten diet and very symptomatic. Just make sure you are eating a full gluten diet until all tests are done and then no matter what the results give the diet a good strict try for a bit to see if symptoms resolve.

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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.
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      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
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    • 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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