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Still Coping...


Guest imsohungry

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Guest imsohungry

Hey everyone,

It's been awhile since I posted. I'm still trying my best to be gluten-free as often as possible. But it is so hard right now. As I stated in another message, my mother has been diagnosed with colon cancer and I am worried about her. She has started Chemo. and radiation, and she is very fatigued. My seizures are happening like crazy...I'm just stressed. But anyway, enough about all of that...

I got an A this term for my class! I'm afraid that I haven't been that good at being gluten-free though...and gosh, my bowels are showing it too! :rolleyes:

I MAINLY wanted to tell you all hey! :P So, ya'll take care! -Julie


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McDougall Apprentice

Hey, you are celiac and eating gluten? I hate to say the obvious but that is a very very bad idea, maybe you get away with it for a little bit but it just is not worth it I promise you. Best thing you could do to help your Mom right now is stay healthy and stay gluten-free. Take care I hope you and your Mom get better.

KaitiUSA Enthusiast

It can be hard but once you get off of it and see how much better you do it really isn't that hard to avoid it.

Think about the risks of cancers, diabetes, and other serious things....that scares me to death and that should scare you away from gluten.

Think about it...is your health worth risking for a piece of pizza?

You will not like the consequences in the long run...it's a very bad idea to stay on gluten.

Hope you and your mom feel better soon :D

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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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