Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Newly Diagnosed With Dh

Greg1

By Greg1
in Dermatitis Herpetiformis

Recommended Posts

Greg1 Newbie
Greg1
Posted

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


BlondeTexan Newbie
BlondeTexan
Posted
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
BlondeTexan
Posted

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
ajay
Posted
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
lindalee
Posted

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

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,560
    • Most Online (within 30 mins)
      7,748
    kristenrachelle
    Newest Member
    kristenrachelle
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • petitojou
      How long does it take to gain weight?

      By petitojou · Posted

      Thank you so much for sharing your experience and I found myself giggling with happiness as I read how your body reached such spring! And I hope that your current journey is also successful!! Definitely starting the food diary! So many amazing advices. And it’s very scary. It really hits all our soft spots as well as our confidence system. Most doctors I went thought I was underage despite being in my late 20s. Right now I look like am I twelve, but is also this body that’s taking so much, so I might as well love it too! Going to make the necessary changes and stay in this path. Thank you again! 🫶
    • petitojou
      How long does it take to gain weight?

      By petitojou · Posted

      Thank you so much for the information and kind message! Reading this transformed how I’ve been viewing my efforts and progress. Guess there’s still a lot to celebrate and also heal 😌  Yes, I’ve been taking it! Just recently started taking a multivitamin supplement and separated vitamin D! I also took chewable Iron polymaltose for ferritin deficiency 2 months ago but was unable to absorb any of it.  Thank you again! Hearing such gentle words from the community makes my body and heart more patient and excited for the future. 
    • ckeyser88
      Roommate search

      By ckeyser88 · Posted

      I am looking for a roomie in Chicago, Denver or Nashville! 
    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.