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stargirl Apprentice

Hi, my name is Laura and I'm 17. I have been Celiac free for 7 months and have met only one other teenager with the disease. I was hoping to find some people who could empathize with me. Any takers?


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celiac3270 Collaborator

I'm 13.......have been on diet for 6 months.....there are a lot of teens here with celiac disease, particularly 17-20 year-olds.

stargirl Apprentice

I keep hearing that everywhere but I never see anybody. I met one person that has the disease that is under 40 and that was last week. I just am tired of feeling alone. I live in a small town in California and for the size of it I know a lot of celiacs. Unfortunately, none of them are anywhere near my age. I just feel lonely. :(

MySuicidalTurtle Enthusiast

HELLO!

I have that problem here. The closest I can get ti "meeting" people my age with this is on-line. Maybe if you ask around your support groups or just keep looking you will find someone.

Kristina

WELCOME to the board!

stargirl Apprentice

Thanks Kristina. As far as I know there is no support group in my town but it is nice to read around on this website and see so many posts that I can agree with. Especially those referring to people's reactions and the constant explaining. It's nice to know that people understand, even if they are only on the computer. :D

flagbabyds Collaborator

I have been diagnosed since I was 20 months old, I am 14, what part of California do you live in?

stargirl Apprentice

Hi! I live by LA in a town named Bakersfield. Where do you live?


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      Guinness, can you drink it?

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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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