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kellykay

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kellykay Rookie

Hi there... well I have known for many yrs that I am sensitive to wheat..but have lived in denial about it...

I recently went to the sjogrens society of canadas patient conference and there was alot of talk about the connection btwn Sjogrens and Celiac.. well I have Sjogrens ...and a very long history of GI problems... I used to complain about it all the time.. and any time I have ended up in the ER it was because of abdominal pain and severe constipation or Diarrhea.. I have always got the old.. you have irritable bowel...

Lately I have had a really awful time with my "stomach issues" as we call them. I have osteopenia at 45... vit d deficiency and a history of iron deficiency.. I am goin to go to my allergist and ask her to test for me Celiacs.. I haven't had any gluten in the last day... will being off it a couple of days make a difference in the antibody test... I feel so awful I am afaird to eat much of anything.. and feeling better right now seems more important...but I would like to know if its an issue....

thanks


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WheatChef Apprentice

Welcome and best of luck with your next doctor's appointment.

Check out some of the other threads on this forum asking for which specific tests to ask for, it seems like a very significant portion of docs are idiots in regards to this sort of condition set and most will not give you all the necessary tests cause they're working off of severely outdated information.

From your symptoms it definitely sounds like you are at quite a high risk for being gluten sensitive. If you're only really at less than a week off of gluten I'd personally suggest you stay on gluten products till you see your allergist. Every day you're off gluten the tests become slightly less reliable to different degrees and while a few days won't have a major effect on it, staying on your regular diet for just a few more days shouldn't be a severe problem for you.

kellykay Rookie

Thanks for the reply.. I did eat gluten yesterday.. and paying for it this morning... I called the drs and am goin to have the test this week.... so lets see what happens

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    • Rogol72
      Hey @Butch68, I also have dermatitis herpetiformis but don't suffer from it anymore. I used to drink Guinness too but I drink Cider now when out on social occasions. I assume you are in Ireland or the UK. If it's any good to you ... 9 White Deer based in Cork brew a range of gluten-free products including a gluten-free Stout. I'm not sure if they are certified though. https://www.9whitedeer.ie/ I haven't come across any certified gluten-free stouts this side of the pond.
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      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.
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      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/ 
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      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. 
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