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

Dermatitis Herpetiformis

vegan lisa

Recommended Posts

vegan lisa Rookie
vegan lisa
Posted

Hi,

I have a skin "rash" on my stomach. (It isn't a rash, more like a handful of super itchy/stinging spots that look like chicken pox or small cold sores on my stomach that burst quickly and scab over.) It's been coming and going for at least 10 years, and for about the same amount of time that I had joint pain. The joint pain went away when I gave up gluten, and came back with a vengeance when I challenged gluten. The rash improved off gluten, but wasn't cured. It worsened somewhat when I challenged gluten, but it wasn't as obvious as the joint pain since the rash comes and goes anyway.

I've thought about being tested for DH, but I just don't know how to go about it. The dermatologists in the area are well known for their incompetence and poor ethical behavior, so I'd have to find a derm one to two hours away to find a competent one. Is competent good enough, or do I need a really fabulous dermatologist for this? Plus, the rash does come and go. Sometimes the sores stick around for 2 or 3 weeks, but often they heal quickly and suddenly. So if I go to a fancy dermatologist at a University hospital, it's a 2 hour drive, probably a 2 month wait for an appointment, and then I may or may not have symptoms?

It's a bit overwhelming, and I'd like some more information before I give up on it! :)

Thanks!

Lisa

Also, do I need to be eating gluten for DH to be diagnosed? If I'm off gluten, the antibodies won't be present, right?

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

It does sound like DH. The antibodies can take a while to leave the skin so it does take some of us some time for it to resolve. Iodine will also aggravate it so when you go gluten free you also need to delete iodine for a while. The derm needs to be specifically looking for DH and they need to biopsy the skin right next to a lesion not the lesion itself. I have heard that you do need to be actively eating gluten for the best chance of a diagnosis. If you haven't been gluten free for very long you may want to omit the iodine and see if that helps. Here is a link to the NIH awareness campaign for celiac and DH.

Open Original Shared Link

eatmeat4good Enthusiast
eatmeat4good
Posted

I don't know how you find a knowledgeable dermatologist. I made appts with the chief of dermatology at 2 medical universities. Waited months for the appointments, drove hours, thought was seeing experts, explained my rash and was examined. Dismissed without a biopsy. I was given the same ole medications any regular Dr. would have given me for acne. They refused to biopsy. Unless you have a way of convincing them that I didn't, there is no guarantee going to a hot shot dermatologist is going to get you any better treatment. Sorry about that. I hope you have better luck and find a good one.

So yeah, my thought is, if you think you have it you probably do. If it goes away when you avoid gluten and iodine, then you know.

cahill Collaborator
cahill
Posted

This is a link to photos of Dermatitis Herpetiformis

*just a word of caution* I would not open the link with children in the room

Open Original Shared Link

cassP Contributor
cassP
Posted

sounds EXACTLY like DH. i guess it's up to you how bad you want the diagnosis. i knew mine were DH.. they came 3 weeks after i quit gluten, and they took 4 months to go away. and yes, you're right-> not every dermatologist is gonna even know what they are. i wish i had taken a pic of mine.. for records. i did not need a biopsy to prove it- i know they were DH. i continued to itch them instead of putting ointment on them, so that my Gi could witness them- but soon after my visit with him, i put a "sovereign silver" ointment on them, and they went away, but my skin is still slightly discolored.

eatmeat4good Enthusiast
eatmeat4good
Posted

Cass? Could you repeat the silver ointment information and where you got it? Is it a prescription? I'm getting really tired of my DH...I wanna try it. Please and thank you!

cassP Contributor
cassP
Posted

Cass? Could you repeat the silver ointment information and where you got it? Is it a prescription? I'm getting really tired of my DH...I wanna try it. Please and thank you!

i just got mine at whole foods... i got the ionized silver (not colloidal) ointment, and it's called: "Sovereign Silver". i THOUGHT since people took Dapsone (antibiotic/antiinflammatory) that silver might do the same thing- it helped in my situation.

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

Celiac.com Sponsor (A8-M):


vegan lisa Rookie
vegan lisa
Posted
  • Author

Very interesting. Thanks everyone. I think I will take pictures next time I have some. I've been relatively clear for a few days now (also gluten and possibly iodine free).

I also think I could easily get my fancy researcher-GI doc to refer me to a dermatologist for DH testing. He thinks I likely have "non-celiac gluten intolerance" and is eager to rule out celiac. Also, then I wouldn't have the burden of convincing the doc to do the biopsy. BUT, I bet pictures would help me both with the GI doc and the derm.

No rush, I guess. I'll start taking photos and talk with my GI doc.

By the way, I had looked at those DH photos before, and they are definitely not for viewing with children (or anyone!) in the room. Beware before you click!

Lisa

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. ShariW
      - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

      In addition to gastrointestinal symptoms like diarrhea, I had gastroesophageal reflux that was becoming intolerable despite treatment with PPIs and antacids. When I went gluten-free, the GERD lessened tremendously (as did the other symptoms).
    2. klmgarland
      - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

      Thank you so very much Scott. Just having someone understand my situation is so very helpful. If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    3. Scott Adams
      - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to ...
    4. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating...
    5. Scott Adams
      - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748
    ebrown
    Newest Member
    ebrown
    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

    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      Help I’m cross contaminating myself,

      By Scott Adams · Posted

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      My only proof

      By Scott Adams · Posted

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisone treatment for inflammation?

      By Scott Adams · Posted

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      I think I am gluten intolerant

      By Scott Adams · Posted

      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  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.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • 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.