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. - knitty kitty replied to Scatterbrain's topic in Sports and Fitness
      9

      Feel like I’m starting over

    2. - Scatterbrain replied to Scatterbrain's topic in Sports and Fitness
      9

      Feel like I’m starting over

    3. - knitty kitty replied to Scatterbrain's topic in Sports and Fitness
      9

      Feel like I’m starting over

    4. - knitty kitty replied to Larzipan's topic in Related Issues & Disorders
      34

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,312
    • Most Online (within 30 mins)
      7,748

    EMP6543
    Newest Member
    EMP6543
    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

    • knitty kitty
      Check your multivitamin to see if it contains Thiamine Mononitrate, which is a "shelf-stable" form of thiamine that doesn't break down with exposure to light, heat, and time sitting on a shelf waiting to be sold.  Our bodies have difficulty absorbing and utilizing it.  Only 30% is absorbed and less can be utilized.   There's some question as to how well multivitamins dissolve in the digestive tract.  You can test this at home.  YouTube has instructional videos.   Talk to your nutritionist about adding a B Complex.  The B vitamins are water soluble, so any excess is easily excreted if not needed.  Consider adding additional Thiamine in the forms Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) or thiamine hydrochloride.   Thiamine is needed to help control electrolytes.  Without sufficient thiamine, the kidneys loose electrolytes easily resulting in low sodium and chloride.   We need extra thiamine when we're emotionally stressed, physically ill, and when we exercise regularly, are an athlete, or do physical labor outdoors, and in hot weather.  Your return to activities and athletics may have depleted your thiamine and other B vitamins to a point symptoms are appearing.   The deficiency symptoms of B vitamins overlap, and can be pretty vague, or easily written off as due to something else like being tired after a busy day.  The symptoms you listed are the same as early B vitamin deficiency symptoms, especially Thiamine.  Thiamine deficiency symptoms can appear in as little as three days.  I recognize the symptoms as those I had when I was deficient.  It can get much worse. "My symptoms are as follows: Dizziness, lightheaded, headaches (mostly sinus), jaw/neck pain, severe tinnitus, joint stiffness, fatigue, irregular heart rate, post exercise muscle fatigue and soreness, brain fog, insomnia.  Generally feeling unwell." I took a B 50 Complex twice a day and extra thiamine in the forms Benfotiamine and TTFD.  I currently take the Ex Plus supplement used in this study which shows B vitamins, especially Thiamine B 1, Riboflavin B2, Pyridoxine B 6, and B12 Cobalamine are very helpful.   A functional evaluation of anti-fatigue and exercise performance improvement following vitamin B complex supplementation in healthy humans, a randomized double-blind trial https://pmc.ncbi.nlm.nih.gov/articles/PMC10542023/
    • Scatterbrain
      I am taking a multivitamin which is pretty bolstered with B’s.  Additional Calcium, D3, Magnesium, Vit C, and Ubiquinol.  Started Creapure creatine monohydrate in June for athletic recovery and brain fog.  I have been working with a Nutritionist along side my Dr. since February.  My TTG IGA levels in January were 52.8 and my DGP IGA was >250 (I don’t know the exact number since it was so high).  All my other labs were normal except Sodium and Chloride which were low.  I have more labs coming up in Dec.  I make my own bread, and don’t eat a lot of processed gluten-free snacks.
    • knitty kitty
      @Scatterbrain, What supplements are you taking? I agree that the problem may be nutritional deficiencies.  It's worth talking to a dietician or nutritionist about.   Did you get a Marsh score at your diagnosis?  Was your tTg IgA level very high?  These can indicate more intestinal damage and poorer absorption of nutrients.   Are you eating processed gluten free food stuffs?  Have you looked into the Autoimmune Protocol Diet?  
    • knitty kitty
      Vitamin and mineral deficiencies can make TMJ worse.  Vitamins like B12 , Thiamine B1, and Pyridoxine B6 help relieve pain.  Half of the patients in one study were deficient in these three vitamins in one study below. Malabsorption of vitamins and minerals is common in celiac disease.  It's important to eat healthy nutrient dense diets like the Autoimmune Protocol Diet, a Paleo diet that has similarities to the Mediterranean diet mentioned in one of the studies.   Is there a link between diet and painful temporomandibular disorders? A cross-sectional study https://pmc.ncbi.nlm.nih.gov/articles/PMC12442269/   Nutritional Strategies for Chronic Craniofacial Pain and Temporomandibular Disorders: Current Clinical and Preclinical Insights https://pmc.ncbi.nlm.nih.gov/articles/PMC11397166/   Serum nutrient deficiencies in the patient with complex temporomandibular joint problems https://pmc.ncbi.nlm.nih.gov/articles/PMC2446412/  
    • Iam
      Yes.  I have had the tmj condition for 40 years. My only help was strictly following celiac and also eliminating soy.  Numerous dental visits and several professionally made bite plates  did very little to help with symptoms
×
×
  • 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.