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

Skin biopsy


Conniem

Recommended Posts

Conniem Newbie

Hi everyone

My daughters recent blood test for celiac disease was negative. This was done after she developed an intensely itchy, blistery rash (both elbows, both forearms, hairline, lower back, behind both ears,  sternum). It did not respond to any treatments. GP said it looks very like DH. She is seeing a dermatologist tomorrow but wouldn’t you know, the rash has suddenly all but disappeared. It did this before, faded away for a few days and then came back. I know the biopsy is taken from skin close to the rash but can it go ahead if there isn’t any active rash? There are one or two blistery spots left and where the rash was is scarred. And can DH die back and flare up again? Thanks 

 

 


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



Celiac.com Sponsor (A8-M):



knitty kitty Grand Master

@Conniem,

Welcome to the forum!  

The rash may flare again if gluten is consumed.  Iodine (as in salt, dairy, and shellfish) can cause DH flares.

Yes, the DH can fade and flare for weeks after an exposure to gluten.

Genetic testing for Celiac genes might be more conclusive.  

People who have DH can test negative on Celiac blood tests.  My antibody test was negative, but I had active DH.  I was diagnosed with a positive genetic test and improvement on a gluten free diet.  

Hope this helps!

Rogol72 Community Regular

@Conniem,

I have DH which was diagnosed by skin biopsy for what was initially thought to be Eczema. Coeliac blood test was negative as was a subsequent endoscopy and small bowel biopsy for celiac disease. My forearms have the tell tale scars from blisters in previous flare ups. As knitty kitty said, Iodine in Dairy can flare it. Our salt is not iodised in Europe. From what I've read and experienced, people with DH are far more sensitive to small amounts of gluten well below 20ppm than most Coeliacs.

knitty kitty Grand Master

Sea salt has iodine in it naturally.

Tamber Newbie

Your daughter sounds just like me! I have gluten sensitivity and then one day I broke out in a blistery rash on my arms, legs and buttocks. The dermatologist thought it was DH but the test came back negative.  It eventually cleared up, kept coming back but to a lesser extent and then switched to my face. And many, many dermatologists later, they still had no answers. Thats the bad news.

The good news - you and your daughter can take control. Keep a food journal of what she eats and what happens with her skin. Or, do an elimination diet, start with a strict diet and slowly add back in more foods. Also take photos of the break outs. A picture is worth a thousand words. The process may be slow but while seeing doctors, its worth it to see if you two can add insight to the mystery.

While there may be many root causes, my problem was with Histamines - processed foods, left overs, champagne, even too much sunlight and perspiration plus many moisturizers and makeups. Im working on healing my gut, watching my diet so  my itchy bumps are finally under control. 

Good luck!

Conniem Newbie

Thanks for all responses. So the rash all but disappeared. The dermatologist said it looked like many things but was not definite for any one thing and she couldn’t do a biopsy as there was no active rash. But now just less than a week later her ears (the rims,  behind the ears and also on the nape of her neck) have broken out again, red, inflamed, burning and itching with yellow looking blisters that popped and dripped fluid down her neck, almost looks like a burn, but it’s not a burn. Now the blisters area has dried up but the skin is red and inflamed and very very itchy. She has red/purple spots on her scalp near the hair line and around the edge of the hairline, but nothing has returned in her back or elbows or hands yet. We have managed to arrange a biopsy for Wednesday. I don’t know what to make of it all. 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
  • 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. - Scott Adams replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Guinness, can you drink it?

    2. - MogwaiStripe replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      15

      Gluten Issues and Vitamin D

    3. - Butch68 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Guinness, can you drink it?

    4. - trents replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      17

      Taking Probiotics but Still Getting Sick After Gluten – Advice?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,214
    • Most Online (within 30 mins)
      7,748

    Grams x 8
    Newest Member
    Grams x 8
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • 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.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  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.
×
×
  • 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.