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Newly Diagnosed With Dh


Greg1

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Greg1 Newbie

I was diagnosed with DH in April of this year. I went to a regular doctor in Oct. of last year, he gave me a steroid cream, and off I went. Four tubes later and no relief I went to a dermatologist who took a biopsy from each arm and was diagnosed four days later. I took Dapsone for 1 month and everything cleared right up. I took my last pill May 13 and have the worst rash to date already. I thought I was gluten free but obviously I was mistaken. I have severly changed my diet again and done alot more reading about what are intolerable ingredients. Is there a way that gluten can come into our bodies through shampoo, lotion, deodorant, soaps etc? I have been gluten free as far as I know for only 1 day and am in severly bad shape with the rash and would like to know if anyone has an idea of how long it takes once gluten free for DH symptoms to begin to subside.

Thank you in advance for any help.


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BlondeTexan Newbie
I was diagnosed with DH in April of this year. I went to a regular doctor in Oct. of last year, he gave me a steroid cream, and off I went. Four tubes later and no relief I went to a dermatologist who took a biopsy from each arm and was diagnosed four days later. I took Dapsone for 1 month and everything cleared right up. I took my last pill May 13 and have the worst rash to date already. I thought I was gluten free but obviously I was mistaken. I have severly changed my diet again and done alot more reading about what are intolerable ingredients. Is there a way that gluten can come into our bodies through shampoo, lotion, deodorant, soaps etc? I have been gluten free as far as I know for only 1 day and am in severly bad shape with the rash and would like to know if anyone has an idea of how long it takes once gluten free for DH symptoms to begin to subside.

Thank you in advance for any help.

BlondeTexan Newbie

I have been experimenting with different ideas. When I get the rash, I find that it helps to drink a lot of plain water. Flush out the system. It takes me personally 3 days to "get over it" and my skin to return to normal. My sister has the herpes-like breakouts that looks like she has leprosy or something. But she eats gluten products and wonders why. :blink:

There are a lot of products on the market that use flour to maintain shelf life. Did you know the candy companies use a light dusting of flour on the inside of the chocolate candy bars to keep them from sticking once they are in the stores? Did you know products like sour cream and Pace brand pecante sauce have gluten in them to maintain shelf life? It's the "natural" ingredient used instead of synthetic preservatives.

Beef broth, multi-ingredient dry seasonings. So many things I had in my kitchen I had to pitch. I am sensitive to these "light" and "natural" additives so that's when I break out in the red rash. Heat and hot water from a shower make my skin "glow" with the red whelts. Since I walk 15 - 18 miles a week at the park trail, I hydrate well throughout the day and it seems to make a difference. And I have been on gluten free foods for a year this weekend. Hope this helps.

  • 2 weeks later...
ajay Newbie
I was diagnosed with DH in April of this year. I went to a regular doctor in Oct. of last year, he gave me a steroid cream, and off I went. Four tubes later and no relief I went to a dermatologist who took a biopsy from each arm and was diagnosed four days later. I took Dapsone for 1 month and everything cleared right up. I took my last pill May 13 and have the worst rash to date already. I thought I was gluten free but obviously I was mistaken. I have severly changed my diet again and done alot more reading about what are intolerable ingredients. Is there a way that gluten can come into our bodies through shampoo, lotion, deodorant, soaps etc? I have been gluten free as far as I know for only 1 day and am in severly bad shape with the rash and would like to know if anyone has an idea of how long it takes once gluten free for DH symptoms to begin to subside.

Thank you in advance for any help.

This may be really obvious, but have you checked your soaps & shampoos? I have found that a lot of soaps (especially the ones that are mild, like aveeno) have wheat germ oil or other "wheaty" things in them. I know you don't eat them (well, okay, I'm assuming you don't eat your soap :) ) but I've found that those things can really bother me if I use them on my skin. Also, it is tough to catch all those hidden glutens, and if you've been pretty strict for a few days, you may have a lot more time to go before it really clears your system. Hang in there and stay gluten-free.

lindalee Enthusiast

I was diagnosed with DH in April of this year. I went to a regular doctor in Oct. of last year, he gave me a steroid cream, and off I went. Four tubes later and no relief I went to a dermatologist who took a biopsy from each arm and was diagnosed four days later. I took Dapsone for 1 month and everything cleared right up. I took my last pill May 13 and have the worst rash to date already. I thought I was gluten free but obviously I was mistaken. I have severly changed my diet again and done alot more reading about what are intolerable ingredients. Is there a way that gluten can come into our bodies through shampoo, lotion, deodorant, soaps etc? I have been gluten free as far as I know for only 1 day and am in severly bad shape with the rash and would like to know if anyone has an idea of how long it takes once gluten free for DH symptoms to begin to subside.

Thank you in advance for any help.

[/quote/ Mine was on my stomach and it took 4 months. I finally got some oil of oregano and put 1 drop in water and sipped it and a dot or 2 on my stomach before bed and it quit itching and cleared up after a couple of weeks. got it at www.bioinnovations.net it is the caspian sea (strong) kind. Hope that helps. LindaLee

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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.
    • 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.
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