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My Endo Ordered The Celiac Disease Panel Test, ?'s For Anyone


dizzygrinch

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dizzygrinch Enthusiast

Hello all, I just noticed, that my endrocinologist, ordered a celiac disease panel test, I am being seen by her because of a severe vitamin d deficiency. Weird thing, I was just telling her all my problems, and after I mentioned to her the findings from a GI doc, right when I said "flattened mucosa" she said, "that is Celiacs disease, that would explain why your deficient in vitamin d", so, I told her my GI doc never even mentioned the possibility of Celiacs, she was shocked, and just shook her head. Well, I have been gluten free for about 5 weeks now, and before that, I have cut back a lot. Should I even bother with the blood test? Im also being tested for other things to, the pituitary glands and things, and I didnt even notice until I read the order for the lab that she is checking for celiacs. I wish I would have known that my Endo would check, then maybe I wouldnt have stopped eating gluten. Should I just start cramming gluten down my throat, suffer, and have the blood work done next week? She needs these tests soon, so I was just wondering... any thoughts?


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leadmeastray88 Contributor

Unfortunately, you're in a bit of a pickle.

5 weeks gluten free may have been enough to change the antibodies in your blood. Even if you cram gluten down your throat for a week, there's a chance your bloodwork will be a false negative.

5 weeks may have also been enough to heal your 'flattened mucosa', although everyone heals differently.

I really don't know what to suggest, although if a clinical diagnosis is important to you then it may not be too late. If you do want to pursue testing you should be eating the equivalent of 4-6 slices of bread per day for 6 weeks, (I think is the recommended intake) and then do the bloodwork. A week isn't long enough.

Hopefully that helps, someone else will probably chime in soon too.

Best wishes!

ThatlldoGyp Rookie

Have you had an edoscopy with biopsies taken that showed flattened villi?

That really may be all that you need for a diagnosis. Check the path report from your endoscopy and see what it says (if you had one). That may be all that they need to secure a diagnosis.

I don't know what to tell you about deliberately glutening yourself. Wild horses could not make me do it for anything, personally! I hope you have had the endo and path report and you don't need to walk down that path at all!

Blessings and please keep us updated!

neesee Apprentice

I would definately take the blood test if I were you. If I recall, you said the somewhat flattened mucosa was in the terminal ileum. That is the last little bit of the small bowel. A finding like that might be more consistant with crohn's or colitis. You really need to get to the bottom of what is making you feel sick.

Good luck :)

neesee

dizzygrinch Enthusiast

Hello all! you do remember correct, it was flattened mucosa in the TI. But, in the same report, he ruled out Chrons and colitis. Said I was normal. So, I just thought it was interesting that the endo decided to check for celiacs. Since Im getting the blood work anyhow, because she is checking other things as well, Im just going to see what it says. Interesting, cause I have been gluten free for so long, I will just tell her that when I see her in three weeks. Now Im really curious on what the results will be, although, sounds like should be normal cause I have been gluten free for so long, but, I will keep you all posted! thanks

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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. 
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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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