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

Diagnosed With Dermatitis Herpetiformis

MDW1

By MDW1
in Dermatitis Herpetiformis

Recommended Posts

MDW1 Newbie
MDW1
Posted

I was diagnosed with Dematitis Herpetiformis last January and my doctor prescribed Dapsone plus a gluten free diet. This past August I had to stop taking the Dapsone because it was causing a problem with my red blood count. So.......

now more then ever I had to be gluten free. Even though I am gluten free (at least I think I am) I am still getting the itchy bumps on my elbows and knees. When it gets real bad, I take a dose of Dapone (I have a few tablets left on my original prescription) and it stops but then I do not take anymore Dapsone but three days later the bumps start up again. Can anyone please tell me when the itchy bumps will stop developing? When they develop is it from some gluten I ate the day before or is it from something I ate a month ago and it just takes time to get the old gluten out of my body? Any help would be very very appreciated!!!

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

Celiac.com Sponsor (A8-M):


Franceen Explorer
Franceen
Posted

All of what you say is true! It can takes months to rid the Gluten from you system enough to completely clear up DH. AND, it takes a LOT of diligence to be completely gluten Free. I thought I was for months, turned out I wasn't. Once I really became obsessive about being truly Gluten Free instead of Gluten "Lite" I had noticeable improvement in the DH, but it took 3 months for it to totally disappear. I now find that I react right away (and now I'm getting intestinal symptoms too within hours). The DH takes about 2 - 3 days to appear and much longer to clear once I've been glutened (a month or more).

I, too, took Dapsone - and almost died from it - I got the anemia and then it affected my liver. Once I stopped it, I HAD to be VERY Gluten Free because I had DH all over my whole body at that point. I haven't taken Dapsone for about 20 months now and am not tempted to take even one. But I DO get Prednisone from my Dr. if I have a very bad breakout from accidental glutening (POINT: it's NEVER purposeful glutening!).

DH is tough because it can be a delayed reaction and take so long to clear. Just keep pursuing more and better Gluten Free Eating! (Restaurants are my worst enemy, but I have to eat out for work and I love to eat out with my husband!)

dhd2000 Newbie
dhd2000
Posted

I was diagnosed in May, but never took Dapsone because of drug allergies. For a few months I had to be very careful and found that other things could also trigger the outbreaks, like advil, iodized salt and maltodextrin. Without those things, I am finally clear, but now sometimes get GI symptoms with some of the premade gluten-free products. If I stick with a very basic diet (meat/fish, fruit, veggies, nuts, rice and potatoes) and limit my gluten-free products, I am fine. And I also found that things like the maltodextrin and iodized salt would cause spots quickly, within a couple of hours, but wheat and advil caused delayed reactions, like a day or two.

Good luck!

Denise

Forgot to ask if you already use gluten-free shampoo and soap, ect.

JoeB Apprentice
JoeB
Posted

After about 3 months being gluten-free, the outbreaks lessened, but every once in a while, I'd get an outbreak on my elbows, knees or shoulders. I never used Dapsone because I found I manage the problem by using aloe and an occassional benedryl to keep the itching bearable. It took me about 18 months after being diagnosed for all the DH symptoms to completely disappear. I haven't had any problems since (I'm about 30 months gluten-free now).

You just have to stick to the gluten-free diet religiously and eventually the itching will disappear. Hang in there.

Rusla Enthusiast
Rusla
Posted

When you are gluten-free you need to be totally gluten free, that means, soaps, shampoos, lotions, food. You must read every label all the time and if you aren't sure don't touch it. I also call all the companies if their phone number is on the bottles. Now, I have DH and being careful of shampoos etc. because it affects the DH also if you have lotion on your hands and it is not Gluten free then when you pick up something to eat, you injest it. I always get glutened at work no matter how careful I am at cleaning things off and wearing gloves to do it. All it takes is a few crumbs for me.

MDW1 Newbie
MDW1
Posted
  • Author

What is the ingredient in the soaps and shampoos that causes a problem? Some of the chemical names are so hard

to determine. I use to use Ban deodorant but I checked and it has a barley extract in it so I discontinued using it. My

diet pretty much consists of boiled/grilled chicken, grilled hamburger, hard boiled eggs, grapes, strawberries, potatoes, frozen corn, frozen peas, rice (gluten free), macaroni(gluten free) & cheese, gatoraid, 7-UP, white zinfandel wine, and milk. I am tempted to eliminate the dairy as I am hearing this may be a problem also. Not sure....So hard.....I think I am eating gluten free but I still break out with these itchy bumps....Not sure if it something I ate yesterday or something I ate 6 months ago. This really stinks!

Archived

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

Go to topic listing

  • 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. lil-oly
      - lil-oly replied to Jmartes71's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Gluten tester

      Hey there, have you been tested for allergies? You may not only have celiac disease but be allergic. I have celiac disease and am allergic to Barley, wheat and rye.
    2. JudyLou
      - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

      Thanks so much!
    3. knitty kitty
      - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

      I have osteopenia and have cracked three vertebrae. Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins. Blood tests don't reveal the amount of vitamins stored inside cells. The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four...
    4. JudyLou
      - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician? Have you been checked for nutritional deficiencies? Osteoporosis? Thyroid? Anemia? Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the...
    5. knitty kitty
      - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

      @JudyLou, I have dermatitis herpetiformis, too! And...big drum roll... Niacin improves dermatitis herpetiformis! Niacin is very important to skin health and intestinal health. You're correct. dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,156
    • Most Online (within 30 mins)
      7,748
    mike101020
    Newest Member
    mike101020
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • lil-oly
      Gluten tester

      By lil-oly · Posted

      Hey there, have you been tested for allergies? You may not only have celiac disease but be allergic. I have celiac disease and am allergic to Barley, wheat and rye. 
    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Thanks so much! 
    • knitty kitty
      Seeking advice on potential gluten challenge

      By knitty kitty · Posted

      I have osteopenia and have cracked three vertebrae.  Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins.  Blood tests don't reveal the amount of vitamins stored inside cells.  The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four to forty-eight hours.  Those "normal limits" are based on minimum amounts required to prevent disease, not levels for optimal health.   Keep us posted on your progress.   B Vitamins: Functions and Uses in Medicine https://pmc.ncbi.nlm.nih.gov/articles/PMC9662251/ Association of dietary niacin intake with osteoporosis in the postmenopausal women in the US: NHANES 2007–2018 https://pmc.ncbi.nlm.nih.gov/articles/PMC11835798/ Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/   Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet https://pmc.ncbi.nlm.nih.gov/articles/PMC8398893/ Nutritional Consequences of Celiac Disease and Gluten-Free Diet https://www.mdpi.com/2036-7422/15/4/61 Simplifying the B Complex: How Vitamins B6 and B9 Modulate One Carbon Metabolism in Cancer and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC9609401/
    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      Seeking advice on potential gluten challenge

      By knitty kitty · Posted

      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
×
×
  • 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.