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

Dh Vs Bullous Pemphigoid


lbsteenwyk

Recommended Posts

lbsteenwyk Explorer

My father has been on a gluten free diet for about a year. He tried the gluten-free diet to see if it would improve his chronic skin problems. He has a 15 year hx of itchy skin that presented as tiny blisters and then turned into red, itchy sores. This has been primarily on his back, arms and legs. The diet seemed to help at first, and by the time he had blood work, he had been gluten free for several months. His blood work was negative for celiac. Later he had a biopsy, which was also negative, but my Mom thinks the dermatologist didn't do the biopsy correctly, because it was not taken from the edge of the lesion.

Last night, my Mom called to tell me that Dad was having a terrible breakout - his back is a mass of sores. She read something in a magazine about a autoimmune skin disorder called Bullous Pemphigoid (hope I'm spelling it right), and thinks this may be his problem. His dermatologist has never been able to give him any type of satisfactory dx and he has not responded to any of the psoriasis or eczema preparations he's been given.

Does anyone have any knowlege of this disorder? Is it commonly mistaken for DH or vice versa?

I also want to comment, that I don't believe my dad has been completely gluten free. He is 78 and is getting mildly forgetful. I can think of 3 occasions that he ate obvious gluten containing foods without thinking. Most recently he ate the cone of an ice cream cone. That was 2 weeks ago. Could it take 2 weeks for a DH reaction to occur?

Any comments are appreciated.


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



Celiac.com Sponsor (A8-M):



lovegrov Collaborator

I don't know anything about the other condition but do know about DH. After doing a search for bullous pemphigoid it does look at least somewhat similar. You also need a biopsy to confirm that one.

The blood tests for celiac disease were not valid, of course, because your father had been gluten-free or nearly so for a few months. If the dermatologist didn't do the biopsy properly that would also lead to a negative result. I don't know how long it takes DH to return after ingesting gluten, but I understand that even small mistakes can bring it back.

richard

cdford Contributor

Time till outbreak varies from person to person. There are several skin disorders that appear similar to DH or can result from undiagnosed DH. I had Sweet's Syndrome long before anyone gave a thought to celiac and DH. My daughter had one of those whose name takes up half a line and I can never remember as well.

The location of the outbreak also varies from person to person. What you described is what our DH looks like. It also has an odd, intense itch. It is different than a histamine (bug bite) itch and is more like thousands of tiny needles attacking from underneath the skin.

The location of the biopsy is important. It is also important that the specimen be handled in a specific way. We had to contact our dermatologist and advise her of an outbreak so that she could arrange for some special equipment and a special pickup from the lab. You might want to do a little research on the process and ask some specific questions of your dad about how his was handled.

  • 2 weeks later...
shanson Newbie

Tell your Dad to use emu lotion -I had that re scaly rash all over my legs and the emu oil did help - ofcourse i also stopped eating Gluten!

Sherry

Guest ajlauer

Sounded like shingles to me. Has he been treated for shingles?? I *think* that involves anti-viral medication.... but I'm not entirely sure.

Archived

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

  • 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. - Rogol72 replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Guinness, can you drink it?

    2. - Scott Adams replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Guinness, can you drink it?

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

      Gluten Issues and Vitamin D

    4. - Butch68 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Guinness, can you drink it?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,218
    • Most Online (within 30 mins)
      7,748

    tiffhorn14
    Newest Member
    tiffhorn14
    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

    • Rogol72
      Hey @Butch68, I also have dermatitis herpetiformis but don't suffer from it anymore. I used to drink Guinness too but I drink Cider now when out on social occasions. I assume you are in Ireland or the UK. If it's any good to you ... 9 White Deer based in Cork brew a range of gluten-free products including a gluten-free Stout. I'm not sure if they are certified though. https://www.9whitedeer.ie/ I haven't come across any certified gluten-free stouts this side of the pond.
    • 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.
×
×
  • 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.