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You Would Not Beleive What The Dermatologist Said To Me


little d

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little d Enthusiast

Hi all

I went to the Dermatologist on Monday because I ate a Subway sandwhich last week and something else with a flour tortilla I just did not follow my diet at all last week, by Friday I started to get a rash that looks to me to be DH. It was on my face under my lower lip and then traveled to my upper lip and spread to my nose it all looked to me like DH with the little blister like. A couple of spots on my arm and fingers. I had decided to go to the same Dermatologist that I went to last year because I did not want to wait to get referralls and all that, because I wanted to go while the rash was active. It does itch, more when I touch it, it looks the same as it always does little blisters very itchy, scaly when it heels. I really did not want to go to the same woman she is only a Physicans Assistant but all the other doctors were booked up and I needed to see about this while I was off and try to have it somewhat heeled before I went to work on Thursday, so I reluctantanly went because the last time she only came in to talk to me for maybe 5 minutes. All I was able to say was I eat gluten free and then she went into a tangent about "I bet its hard to eat anything" kind of speach ashured me that I did not have DH, told me that we could test it blah blah blah and left the room gave me so stuff to put on my arm and said if it does not go away with in a few days to come back. Well I did not because when I get it, it will last for 3 weeks and I'm done until the next year. By the time I went to her last year I was in my 3rd week and it was pretty much over. So when I started with my rash this time I did not want to wait because it is on my face and I needed to get it seen for work. This time she came in I had told her I believe the rash is becuase of the food I ate, she told me don't eat that anymore and bascically told me that DH only "ONLY" happens on the outer elbows. Then she breifly talked about using differant lotions that is good prescripbe me something and gave me samples that does seem to be working a little it is Locoid Lipocream (hydrocortisone butyrate 0.1%) cream. She then proceeded to tell me that she did not think that it was DH once again it "only happens on the outer elbows" and she was going to leave the room. I had kept asking what is she going to call it then and she said something like an internal drug response contact dermatitis pretty much telling me it is something internal that I am reacting to. No really I wanted to say. I had to invite her to look closer to my face touch it and she reluctantly did, her comment was it looks like Poison Ivy but she knows that it is not. I asked her did she want to test it she said not on my face but she looked at my arm again that had a little spot and it did look blistered one new and the other one was older and a little crusty so she did a biopsy. I had not a clue on what the biopsy entailed never had one so I said sure, but was not able to take an healthy biopsy because they did not have the right solution for that one so I have to go back. Not looking forward to that. If the biopsy comes back normal then I won't go back. It is sad that I had to push for something, I know what is wrong with me, I really had to go for work because working in the health field people freak when they see stuff that is wrong especially were i work.

donna


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ravenwoodglass Mentor

I would find articles on DH from places like the NIH and Pubmed and print them out and bring them in with you on any visit to a derm. If this person was a Physicians assistant then I would print them out and send them with a short letter to the head of the derm group. She needs to be educated fast. Going over her head and pointing out her stupidity with peer reviewed articles may help the doctor that she is supposed to be working with educate her. If she didn't know for sure what was going on she should have called a doctor in to look. She is a PA not a doctor and it sounds like she may be forgetting that there are others in the office that may just know a bit more than she does.

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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. 
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      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.
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      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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