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Haven't Been Tested Just Yet -


8tatertots

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8tatertots Newbie

BUT....after seeing some of the symtpoms people have mentioned on here, I'm going to get tested right away. It all kinda makes sense..I think...

For years I have had diarrhea (including blood sometimes) and have been looked at several times, even had a colonoscopy and no one could ever find a cause. I have had these little itty bitty blisters on my hands for years with no explaination. Heck, I thought I was allergic to lavendar baby oil! I have always been more tired than anyone else I have ever known - always needed a nap in the afternoon. I've never been "allowed" to give blood because my tests have always come back with my iron being too low... Is it possible I have this?


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nu-to-no-glu Apprentice

Yes, quite possible. Many people here have been told they are quite healthy despite varies symptoms, IBS diagnosis, etc. If you do some searching here, you'll probably find many people with similar stories to yours (and then you'll become addicted to this site like I have, which is ok because there are so many nice, informed, helpful members here!)

In the Drs forum, there are lists of recommended drs that have helped people in many states, as it can be very frustrating findind a dr. To help you when you have "normal" colonoscopy results, etc.

My other advice is, if you test negative on the celiac panel, you can also try to find an allergist that will test for various food intolerances, or just give the gluten free diet a try. I spent many years and lots of money seeing GI specialists, until I found an allergist/Immunologist who knew enough about celiac to help. I'm just getting started, and am such an advocate of this site and the help it has provided for me! Sounds like it will be for you as well. Best of luck!

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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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