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I Knew He Needed To Eat Gluten Free! But Not Celiacs


I hate gluten

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I hate gluten Apprentice

I have been at this forum since January ish of this year. You all have helped me tons more than any doctor my son has ever seen. We started our son on a gluten free diet and he has thrived more than anyone can imagine. To our shock we found out this week our son has a form of autism. To any sceptics that do not beleive that the gluten free diet can help, we are living proof it does. I have joined many support groups and you would not beleive the resistence of switching their child diet. People would rather have their child on drugs! They think it will be to hard to keep them on this diet. This train of thought is very shocking to me, but to each his own. As of right now my son does not need any meds and will take every route I can to keep it that way. This diet is hard but nothing in life is easy. Thank to all who have been on this journey to find answers for my son.


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ang1e0251 Contributor

Welcome to the Forum! I think you son is so lucky to have such a caring parent. I also see many people say they would never do the diet because it is too hard for them. I don't have much respect for them. It's your child and they only have so many chances for good health. The diet is tricky in the beginning but it get's easier as time goes on. Soon it will be second nature for you.

MySuicidalTurtle Enthusiast

That is great for your son! I am glad the diet is working!

GottaSki Mentor

That is great news! Thanks for sharing.

We have family and friends that are sad for me that the only treatment for celiac is diet....I'm constantly telling them...NO...this is good news. All I have to do is change my diet...no drugs, no surgery and I'll get healthy just from adjusting our food.

This is GREAT NEWS!

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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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