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Help With Going Totally Gluten Free


Genna'smom

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Genna'smom Apprentice

Hi all

I am looking for advice on what to do for my almost 3 yr old D. She is has been gluten free now for almost 1 year after she stopped eating and drinking and had to be put on a feeding tube to live. She is now starting to eat and drink more but we have been through her being sick for the last 4 months (cold, constant running nose, chronic cough and vomiting off and on) she has been on so many meds I finally just stopped them all. She is doing ok but is clingy, cries a lot, bites, has tantrum and does not sleep through the night...... When I approached her GI dr about making sure our whole house went gluten free he told me NO that is not necessary she is not that bad...... is there varing degrees of celiac's disease.... He told me her test showed only early warning signs - I aksed them about challenging her and he said no way as we do not want to be where we were 1 year ago with her not eating or drinking at all. My husband and I were both tested and no one has it in either of our families. Any advice or help from you all. I am seriously thinking of trying it for a couple of weeks to see what kind of reaction I get. Any help on a good bread and my 5 yr old and husband eat sandwhiches almost every day......

Thanks from a frustrated mom....

Bonnie


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MySuicidalTurtle Enthusiast

No, there is no varying of Celiac Disease. If you have it, you have it. Your baby girl needs to be 100% gluten-free. This, however, does not mean your family has to be. As long as you keep her stuff separate, then you're fine. Some families find it easier to all be gluten-free. My family is 3 out of 4 Celiac but my Father isn't gluten-free. I live with my boyfriend and he isn't gluten-free. I have my pans, my shelves, and my food. He knows to not touch my stuff and your family will have to learn this, too. You do need to get her her own toaster and such because you don't want to cross-contaminate her food. You will get the hang of it! It just takes time! Good luck to your little girl!

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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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