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:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    2. - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    3. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    4. - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    5. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,084
    • Most Online (within 30 mins)
      7,748

    bigwave
    Newest Member
    bigwave
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • AlwaysLearning
      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
×
×
  • 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.