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Am I Playing With Fire?


jasonD2

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jasonD2 Experienced

I have been off gluten since 07 and at first was super strict and it made me absolutely paranoid and I hated life, so I decided to toss caution in the wind and go back to eating out and my life has been great again. I am still SUPER careful when I dine at restaurants but I just dont obsess the way I used to. Thing is, can I still be harming myself? i never had a positive celiac diagnosis and my blood tests and biopsies came back negative, but my stool anti gliadin tests were positive and I carry 1 of the 2 celiac genes. My mother is negative for both celiac and the genes but her stool tests were positive and she seems to do fine on gluten, even though I think she would benefit from eliminating it from her diet but shes stubborn.

After all these years I still dont know what I really have but I do know that I do ok most of the time when eating out. I often dont even inform my waiter of my sensitivity and just order and eat carefully and am fine

So the other day at Thanksgiving I accidentally ate gravy that had flour in it. I shouldve asked the host but it looked so liquidy that i didnt think there could possibly be any flour in there..well i was wrong. Minutes after eating I developed major bloating and was uncomfortable the rest of the night, however the next day I felt completely fine. So obviously my body still doesnt like gluten but my question is could this be celiac or just gluten intolerance? also since my body has not had gluten in a long time could this reaction have been my GI going into "defense mode"? While I felt very bloated I wasnt really very gassy...just kinda felt like my GI seized up and was being squeezed.

So i guess my question is should i just keep being careful or do i really need to be super strict again?


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shadowicewolf Proficient

eh, just avoid it imo. I'm as strict as i can be, but for part of the year i live with gluten eaters... there are times when i wonder if i accidently cc'd myself. I don't have major symptomes like some of the others (the big one is "C" and axiety), so sometimes its hard to tell.

burdee Enthusiast

I have been off gluten since 07 and at first was super strict and it made me absolutely paranoid and I hated life, so I decided to toss caution in the wind and go back to eating out and my life has been great again. I am still SUPER careful when I dine at restaurants but I just dont obsess the way I used to. Thing is, can I still be harming myself? i never had a positive celiac diagnosis and my blood tests and biopsies came back negative, but my stool anti gliadin tests were positive and I carry 1 of the 2 celiac genes. My mother is negative for both celiac and the genes but her stool tests were positive and she seems to do fine on gluten, even though I think she would benefit from eliminating it from her diet but shes stubborn.

After all these years I still dont know what I really have but I do know that I do ok most of the time when eating out. I often dont even inform my waiter of my sensitivity and just order and eat carefully and am fine

So the other day at Thanksgiving I accidentally ate gravy that had flour in it. I shouldve asked the host but it looked so liquidy that i didnt think there could possibly be any flour in there..well i was wrong. Minutes after eating I developed major bloating and was uncomfortable the rest of the night, however the next day I felt completely fine. So obviously my body still doesnt like gluten but my question is could this be celiac or just gluten intolerance? also since my body has not had gluten in a long time could this reaction have been my GI going into "defense mode"? While I felt very bloated I wasnt really very gassy...just kinda felt like my GI seized up and was being squeezed.

So i guess my question is should i just keep being careful or do i really need to be super strict again?

Whether you call it gluten intolerance or celiac disease (evidenced by flattened villi), obviously gluten still damages your body. I also was diagnosed only by stool antigliadin and celiac gene test. However I figured out that gluten causes me pain and bloating, I will still avoid it as best I can. Same with my 6 other delayed reaction food allergies. I occasionally make mistakes ... I trust a product which was previously safe (and then changed their ingredients to add my allergen) or I eat a buffet dish which was adjacent to a dish with my allergens (and I get contaminated from my 'safe' dish). I always get obvious reactions, even with small mistakes. So I continue to avoid gluten (and my other 6 allergens). I don't need to impress anyone by eating foods that cause painful symptoms. If anyone is offended by my carefulness, that's their problem. Everybody avoids some foods, whether for medical restrictions, caloric value or just plain personal taste preference. Make your health a priority no matter what. It's difficult to be sociable when you feel crappy.

GFinDC Veteran

Hi Jason,

You may not have seen this new research that was done this year. It confirms the existence of a non-celiac wheat reaction in some people. They seem to have identified 2 separate conditions in fact. One with celiac like symptoms and another with allergy like symptoms. Right now there is no informaton on the long term effects of these conditions.

Non-celiac wheat sensitivity article

https://www.celiac.com/articles/23033/1/Non-Celiac-Wheat-Sensitivity-It-Exists/Page1.html

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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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