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Frustrating Diagnosis


Linkz

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Linkz Newbie

I have most of the classical symptoms such as abdominal pain(worse 20 mins after meals) brain fog after breakfast, skin rash, etc. The genetic test indicates that I am extremely highly predisposed to celiac. Yet my doctors cannot find a sensitive and specific test that will confirm celiac. Based on what I have read, I can bet anyone $1,000 that I have celiac. Please recommend the most specific and sensitive blood test for celiac. This just too frustrating!!!


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vbecton Explorer

May I ask which genetic testing you used? I am anxious to get that done as all my other medical workups continuously come back celiac negative, but after following a gluten free diet for over 1 month I'm a new person!

WheatChef Apprentice

Technically there is no real blood test for celiac. Doctors will use the IgA-tTG (tissue TransGlutaminase) test to prescreen you for a biopsy of the small intestine. Observable damage to the microvilli of the small intestine is the official diagnostic method of Celiac disease.

Keep in mind, celiac disease is a lot less common than gluten intolerance which is basically the starting point of celiac disease. Additionally most of those genetic tests don't actually test for celiac disease they look for gluten intolerance genes.

Out of curiosity, which genes did you have?

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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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