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

Could Rash/swellings Be Dh?


Indigo - Brighton -UK

Recommended Posts

Indigo - Brighton -UK Newbie

Hi I am new to the site. I have been gluten free since last spring but accidently had gluten in November.

I need to ask if people think my facial rash/swellings sounds like DH. I get a swollen red rash on my face (normally cheeks and nose) the point at which it starts sometimes blisters. As it goes down the skin peels off - it normally lasts 5 days. It doesnt go down quicker with antihistamine or steroids. It feels very sore to the touch there is a stronger pain around the edges and it can itch as it goes down but not badly.

When I have the swellings my eosinophil count in my blood is raised and I can feel unwell with it. There is an improvement as well as in my stomach problems (diagnosed IBS, negative one site biopsy for coeliac but with gluten in diet only 2 weeks before and there was a high eosinophil count in villi, there was one polyp) with the gluten free diet and when I accidently seived my childrens pasta and then mine in the same colander that night it came up worse than it had for months and my stomach flared up to.

Does this sound like DH? Its undiagnosed despite pursuing loads with unhelpful dermatologists and I coincided with the start of my stomach problems after my youngest son was born.

I also have asthma and rhinitus (no improvement in those yet) but I live in hope.


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

It could be gluten related but it is really hard to say. Normally DH doesn't appear on the face but that doesn't mean it can't show up there. One thing I would do is go back to your derm and ask them to biopsy looking specifically for DH. They have to biopsy next to the lesion not the lesion itself. Here is a link to some info from the US National Institute of Health that has info on DH and on the biopsy procedure.

Open Original Shared Link

Indigo - Brighton -UK Newbie
It could be gluten related but it is really hard to say. Normally DH doesn't appear on the face but that doesn't mean it can't show up there. One thing I would do is go back to your derm and ask them to biopsy looking specifically for DH. They have to biopsy next to the lesion not the lesion itself. Here is a link to some info from the US National Institute of Health that has info on DH and on the biopsy procedure.

Open Original Shared Link

Thanks I am not looking forward to going back because they discount me quite a bit butit looks like it is the best idea.

Mother of Jibril Enthusiast

Have you ever looked at the symptoms of lupus?

One of them is a "butterfly-shaped" rash over the cheeks and nose. People with lupus tend to be very sensitive to the sun... so sensitive that you could get a sunburn just from sitting by a sunny window. It's also associated with arthritis, fatigue, and a low-grade fever (although the symptoms can really vary from person to person) and the same gene (HLA-DQ7) that can cause gluten and cow's milk intolerance, allergic rhinitis, and grass/pollen allergies.

Here's one website for more information:

Open Original Shared Link

Unfortunately, lupus can be difficult to diagnose. ANA (anti-nuclear antibodies) is one test that's commonly used, but it's not specific for lupus... people with other autoimmune disorders can have positive results. Even apparently "healthy" people can sometimes have positive results. But... it's not good to have your immune system making antibodies against your own organs.

Pregnancy is a common trigger for autoimmune disorders... it was for me <_<

Indigo - Brighton -UK Newbie

Yes I spent some time considering Lupus. I have had the ANA test and it was negative. I am not sensitive to the sun. I have had the rash about 9 years and there has been no sign of organ damage.

The rash does seem to be responding to a coeliac diet but when I just went very low gluten (everything except for traces) the rash continued.

I definitely have auto immune complications. I also get a high eosinophil count and have had pulminary eosinophilia which started also caused liver function problems and a high vit B12 level. That stopped when I stopped using an inhaler which had soya in it.

Indigo - Brighton -UK Newbie

Is it common practice to get genetic tests done in the US. It is not ever offered in the UK?

Mother of Jibril Enthusiast

Some doctors in the US will order genetic testing (so your insurance will pay for it), but it's not very common. I had to order and pay for the test myself. I don't have an official diagnosis of celiac disease, but I do have the DQ8 gene, a couple of other autoimmune disorders, and the diet has REALLY helped. That's enough to keep me gluten-free!

I also found it interesting when DQ7 turned up. Problems like grass and pollen allergies, sinusitis, depression, thyroid disorders, and lupus are very common in my dad's family.


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



Celiac.com Sponsor (A8-M):



nasalady Contributor

Another possibility to consider, if it's not DH, would be psoriasis. There are 5 different types of psoriasis (and at least one of them causes blisters); it can appear on the face. Psoriasis is an autoimmune disease.

Good luck! I hope you get some answers soon!

JoAnn

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.