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Someone To Talk To


anwen98

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anwen98 Newbie

hi, my name is Anwen and i am 13(nearly 14) years old. I was diagnosed with celiac about 3 years ago and have been gluten-free since then. But, even tho I have been gluten-free for so long I still find the temptation hard to deal with. My family and freinds are all very supportive but none of them have celiac so I feel they do not quite understand and I would love a penpal who also has celiac that I could talk to. Any replies would be appreciated.

Thanks :)


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rosetapper23 Explorer

I'm sorry you're feeling so alone with your celiac! The Gluten Intolerance Group of North America has a program for teens where you can be put in touch with teens throughout the U.S. with celiac or gluten sensitivity. Here's the link to Teen Advocates with Gluten Sensitivities (TAGS):

Open Original Shared Link

You should find lots of support there!

Laura

shauniscrazy Explorer

hi, my name is Anwen and i am 13(nearly 14) years old. I was diagnosed with celiac about 3 years ago and have been gluten-free since then. But, even tho I have been gluten-free for so long I still find the temptation hard to deal with. My family and freinds are all very supportive but none of them have celiac so I feel they do not quite understand and I would love a penpal who also has celiac that I could talk to. Any replies would be appreciated.

Thanks :)

Hey im shaun i am 16 and would like a pen pal too

  • 2 weeks later...
KatieL1321 Rookie

Hey! I'm Katie and I'm 15 years old. I was diagnosed this year in january and would love a penpal :)

kaitlynrose Rookie

Hey, I'm Kaitlyn :) I'm 17 and I've been gluten-free for a little over 2 years. I'd love a penpal :)

Gemme Rookie

Hello Anwen,

Just to say i feel so sorry for you , so young , I am 56 and feel alone in family as they all mix up and talk while eating. This is one hard fact we all have to face.

Hope you will find good friends here.

Take Care

  • 2 weeks later...
Ebonyjade93 Rookie

Heyy I'm Ebony, I'm 19 and the only one in my family who is gluten free, it would be good to have a penpal to talk to about everything :) xx


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Madilou7 Newbie

Hey I'm 13 and I've had celiac disease for 9 years. I would love to have somebody to talk to. It's really easy to feel alone in this and I highly suggest you find somebody to talk to.

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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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