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

Does Dh Have To Blister?


JennShad

Recommended Posts

JennShad Newbie

Is blistering a necessary characteristic in order for it to be considered DH?....before a biopsy either confirms it or not that is. Mine has never blistered.


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

Open Original Shared Link

"Can a skin rash be associated with celiac disease?

Dermatitis herpetiformis (DH) is an itchy, blistering skin condition that is a form of celiac disease. The rash usually occurs on the elbows, knees and/or buttocks, and is characterized by its bilateral nature; both knees (and/or both arms) are affected, seldom just one. Many people with DH have no digestive symptoms and only about 40% of them have the positive blood tests (serology) for celiac disease. However, they almost always have the same, gluten-dependent intestinal damage as those with more common symptoms of celiac disease.

DH is diagnosed by a skin biopsy, which involves removing a tiny piece of skin near the rash and testing it for the IgA antibody. DH is treated with a gluten-free diet and medication to control the rash, such as Dapsone or Sulfapyridine. Drug treatment is short term, usually until the gluten-free diet begins to relieve symptoms. It’s not necessary to perform an intestinal biopsy to establish the diagnosis of celiac disease in a patient with DH; the skin biopsy is definitive."

Some pictures from a reliable source:

Open Original Shared Link

jlaw Apprentice

Hi Jenn, my DH comes in many different forms all at once. Some of them are not blisters at all but still definitely DH, so I would say the answer is no.

squirmingitch Veteran

No, it does not have to blister. Read the entire thread in this link:

JennShad Newbie

Thank you guys for the input, it's really helpful.

kareng Grand Master

I think that, according to the experts, DH does blister. I posted a couple of medical references about this. It could be possible that after you have been gluten-free, it doesn't come back as strong when glutened.

Here's a few more:

Open Original Shared Link

Open Original Shared Link

sisterlynr Explorer

DH presents as blisters on me.


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



Celiac.com Sponsor (A8-M):



dilettantesteph Collaborator

There are other skin conditions associated with celiac disease besides DH: Open Original Shared Link

  • 5 weeks later...
sisterlynr Explorer

I saw a new Dermatologist today. This is the 5th one that has looked at my skin to determine what the rash is or is not. He asked if I had blisters (yes) and said he really wished he had seen a blister. I had pictures and described how I used a sterile needle to release the fluid from blisters. That seem to satisfy him that I had blisters even though I have quite an area of rash that the skin has broken and inflamed. Gave me another steroid cream and warned me about infection, told me not to scratch. He asked me, "Does it feel like nettles?" "You ever gotten into a nettle patch?" My reply is "Yes sir."

He wasn't really happy that I was on Dapsone but did take 2 more biopsies NEXT to the lesions on my lower back. He asked if I had had a G6PD test to see if I could tolerate Dapsone. Not had that so he ordered that test. So, not sure without seeing a blister and with being on Dapsone what this biopsy will show but he documented on my record that I had DH.

I told him about the Dermatologist that told me to see a mental/health doctor. He defended him by saying that the skin on my back is thickened from rubbing, scratching and the lesions healing and that is why he would have told me it was neurological in nature. I guess he had to speak up for his associate. :rolleyes:

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,561
    • Most Online (within 30 mins)
      7,748

    lamps
    Newest Member
    lamps
    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
      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
      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
      I am looking for a roomie in Chicago, Denver or Nashville! 
    • Scott Adams
      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
      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.