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A Few Questions About This


Q1821

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Q1821 Apprentice

Ok, I don't know if I have dermatitis herpetiformis because I don't think I have gotten a good description of it. Here is what I have, I only seem to get them on my head and some times by bottom. I only get a few at a time and they start off just very painful spots. You can't see them, sometimes they get red but then they get so painful I pop them and they just get a little p%$#@# and then they bleed. I also get little white bumps on my lets and back of my arms, anyone else get them? Anyone else know about the other bumps I have? Thanks


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momofahokie Newbie
Ok, I don't know if I have dermatitis herpetiformis because I don't think I have gotten a good description of it. Here is what I have, I only seem to get them on my head and some times by bottom. I only get a few at a time and they start off just very painful spots. You can't see them, sometimes they get red but then they get so painful I pop them and they just get a little p%$#@# and then they bleed. I also get little white bumps on my lets and back of my arms, anyone else get them? Anyone else know about the other bumps I have? Thanks

I am new here and also newly diagnosed. I was diagnosed at Thanksgiving. I have started having these also. I get one or two on my face everyweek, and yesterday I had a breakout of several on my neck and around my collar bone. They don't itch, but they do look like boils or papuls. Like you nothing seems to come out but some fluid. They do get very sore sometimes.

chrissy Collaborator

i think that dermatitis herpetiformis is extremely itchy. i think it can show up in a number of places, but the most common are elbows, knees and the bum. it is usually symetrical on both sides of your body, but i'm sure there are exceptions.

Generic Apprentice

It usually also leaves a purplish scar as it heals.

PeggyV Apprentice

Are they small spots or larger? Or both. I would get small clusters (3 to 5) of small blister. sometime just one, but they itch really bad. They eventually turn red and go away. Now that I am gluten free I dont get them to often, usually after my digestive tract tells me I have been glutened.

I have also had the really sore spots, I figured they were boils....but I dont really know what causes them.

jesse Newbie

Q1821 i get this alot also, and it is something i have wondered myself. if you hear anything more about this lmk as i would like to know please.

i also get like some sort of ravenous acne on the shoulder, upper back and chest; do you get this?

lmk,

jdog

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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.
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    • 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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