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Kristina23

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Kristina23 Newbie

Hi there

I found out that I have a gluten allergy about 7 months ago im almost certain that I have celiac disease because of a life time of symptons that fit the description . I ll explain.

As im sure you already know the " I went to the doc and the doc said ive done every test and well i think its in your head" Well that was me i had ibs lactose intorelance pains sleepness crankiness depression acid everything they just kept giving me another pill for.

Im 27 now and 7 months ago got really sick with gastridits.

The doc said bland foods crackers pasta breads...... well months go by im getting sicker my face is looking like a pizza pie im in so much belly pain under the right rib cage i cant sleep getting fat. Were like WTF so someone mentioned celiac and then someone else .( in the mean time i had tests done endyscope(not spelled right) well test came back and the doctor who did the test wrote chronic damage (years of damage) the other doc who was telling us whats going on said oh its nothing.

Well i went for the rast test they said i have gluten allergy and with the chronic damage to the small intenstine im assuming celiac. My rast result was (F7g) dont know if anybody knows what that means if so please let me know :)

With in two days of going gluten free i felt like a new person i felt better than i had in years!!! I lost 30 lbs my face cleared out im feeling much better.

The only thing i live in greece and well the testing of celiac isnt known and the food is unavailable.So i have my parents and friends send me stuff and today i found a site in gernmany that delverys and isnt so expensive.

Thanks for listeining.

Kristy :)


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GottaSki Mentor

Welcome Kristy!!

You are most definitely not alone...many of us went years with docs running blood tests that come back normal, normal, normal...only problem is this is not in our heads and unfortunately many of us have to get extremely sick and have major damage to our intestines before doctors finally stumble on Celiac or we find it on our own.

Very glad you are feeling better...this is a great site to find all the info you need to stay gluten-free or just to come and chat or vent with others that understand.

-Lisa

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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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