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How Long Are You Binned After A Glutening?


Leper Messiah

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bridgetm Enthusiast

I've been having those carb cravings this week. Last week I was hit by cross-contamination probably everyday thanks to the cafeteria <_< and was in pain. This week it was constipation (I don't get D often either) and constant hunger pangs. I've been eating a lot of cereal, trail mix bars and wafer cookies. Today I finally feel like my system is moving just a little bit.


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Leper Messiah Apprentice

You know, I used to have the brain fog constantly, but now I don't notice it as much when I take an accidental hit. I think that for me it was a cumulative effect. A small hit is enough to pull up the more physical symptoms but doesn't take down the whole brain with it. I wonder about the carb hunger. I remember being hungry ALL the time pre-gluten-free, and I would go and pour myself another bowl of mini-wheats cereal. (sigh) I don't really crave carbs anymore. In fact, if I eat too much sugar or starch, my blood sugar goes wonky. I used to crave them a lot, though.

How long you been gluten-free i-geek?

bridgetm Enthusiast

Just an update: Those symptoms that I thought were a second wave after that week of recurring CC were actually a seperate reaction... to Dermatone sunblock. I thought the break out on my face, neck and arms was an allergic reaction that I've experienced before to various sunscreens, but I finally took a closer look at the label last night and guess what I found? Tocopheryl acetate. The rash must have been DH. That tube of my favorite sunblock ever is now in the trash.

i-geek Rookie

How long you been gluten-free i-geek?

Four months this weekend.

Shannonlass Apprentice

Wow guys. I really feel for you all. Maybe because I am a newby (9 weeks gluten free today!) but I don't seem to be taking a reaction at all (see my other thread) It kind of has me worried though. I'm afraid I am not doing the diet properly at all and the first I will know of it will be when I get my antibodies checked in June :(

Mskedi Newbie

are you all completely down for the count for this long or are you still making it to work during this time?

I'm useless for a good four to twenty-four hours. Because of that, I've gotten into the habit of only taking risks like eating out at a new place or eating something a friend prepared on Friday nights. That way I won't miss work. I got hit pretty bad this past Friday night, actually, and Saturday morning was no fun. It's still messing with me now, but I'm functional.

Skylark Collaborator

I get a day of GI symptoms and starting about 24 hours later a couple days of brain fog, anxiety, and depression. Not pleasant at all.


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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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