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Poll: Official Diagnosis Or ?


Nantzie

Do you have an official diagnosis?  

82 members have voted

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par18 Apprentice
Here! Here!!

Though, I'm finding that without an "official" diagnosis, some people (other doctors, hospital staff, etc) don't take ya seriously. When are they going to WAKE UP????

I hear what you are saying. To tell you the truth though even with my "official" diagnosis most people don't take my condition seriously. As far as doctors are concerned most don't understand Celiac to begin with so they could not help you if they tried. I make sure that I have a medical alert tag (bracelet or necklace) with me at all times when away from home. I think anyone could get or wear one. The main responsibility for our safety is unfortunately ourselves. I think the awareness is getting there but the support (resturants, hospitals etc.) is still lagging. The more of us (official or unofficial) who continue to request gluten free as part of our lifestyle the sooner this will happen. A good first step is to get the rest of the approximately 95% of us on board any way we can.

Tom


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emcmaster Collaborator
Here! Here!!

Though, I'm finding that without an "official" diagnosis, some people (other doctors, hospital staff, etc) don't take ya seriously. When are they going to WAKE UP????

I don't tell new doctors that I haven't been tested. I tell them I have Celiac and no one really asks questions after that. Don't doctors that are knowledgeable about celiac say that positive dietary response is often enough "proof" that someone has Celiac/gluten intolerance? IMO, it's enough for me.

ryebaby0 Enthusiast

My son was diagnosed via staggeringly positive bloodtests followed by blindingly obvious biopsy; my husband was diagnosed via equivocal ttg, amazing dietary response, and no biopsy. (So I just didn't know which button to choose!)

joanna

corinne Apprentice

Not sure how to answer this one. I was diagnosed with collagenous colitis by a biopsy. A gluten free diet often works for this disease so I tried it and was successful after eliminating dairy and some other foods.

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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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