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I Go To The Gi On Thursday


KarenFe

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KarenFe Contributor

I am going to the GI doctor on Thursday and want to make sure I know everything I need to ask about. I will ask about a biopsy, calcium levels, vitamin D levels, iron pills to take (I am anemic), and my diet. These are good things to ask about, right? Is there anything else I should know to ask or discuss?

Thanks so much!

Karen


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happygirl Collaborator

Have you been diagnosed with Celiac or are you searching for a diagnosis?

KarenFe Contributor

Searching, I suppose. The blood test I had revealed a "gluten intolerance" with numbers that were high. The nurse who called me with the results said I have celiacs disease, but I know she was a bit ignorant on the issue. She also told me to eat gluten free but I can have gluten if I don't mind feeling a little bad.

leadmeastray88 Contributor
She also told me to eat gluten free but I can have gluten if I don't mind feeling a little bad.

Oh goodness...

There are 2 things very wrong about what she told you:

First, if you're going to have a biopsy, you HAVE to be consuming gluten for your biopsy to be accurate. A "normal" amount is the equivalent of 4-6 slices of bread a day (some have said).

Secondly, if you have Celiac's you CANNOT have ANY amount of gluten, not even a little. If you do, you're setting yourself up for some major health problems, including cancer and other autoimmune diseases. It's not about "feeling a little bit bad", it's about you having an autoimmune reaction to gluten...in other words, gluten is destroying your intestines and other organs.

Unless you don't plan on getting a biopsy (since your bloodwork was positive) then you can go ahead and start going, I might add, completely gluten-free.

You've already found a great support group! We're here to help! :)

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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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