Jump to content

  • 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):

Dermititis herpetiformis

Linny H

By Linny H
in Dermatitis Herpetiformis

 Share

Recommended Posts

Linny H Rookie
Linny H
Posted

Have been on a Gluten free diet since my diagnosis in June 2021. Was diagnosed with DH last fall and started taking dapsone. This medication is affecting my red blood cells and I am experiencing fatigue and minor dizziness from time to time. I plan to discuss stopping the dapsone with my dermatologist at the end of the month. Anyone else taking dapsone? How long? Side effects? Why isn't my diet preventing this condition?

Thanks for any advice!

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

Celiac.com Sponsor (A8-M):


Rogol72 Community Regular
Rogol72
Posted
13 hours ago, Linny H said:

Have been on a Gluten free diet since my diagnosis in June 2021. Was diagnosed with DH last fall and started taking dapsone. This medication is affecting my red blood cells and I am experiencing fatigue and minor dizziness from time to time. I plan to discuss stopping the dapsone with my dermatologist at the end of the month. Anyone else taking dapsone? How long? Side effects? Why isn't my diet preventing this condition?

Thanks for any advice!

Are you eating oats and dairy? If so, cutting them out should help. I found that eating a mostly AIP diet is the only thing that works keeping my DH in check. Coeliacs with DH are a lot more sensitive to trace amounts of gluten. Dapsone is a broad spectrum antibiotic, so taking a probiotic to counter the antibiotic side effects should help.

I use Dapsone sparingly as needed. It artificially lowers HA1C. I make sure that I get all the vitamins and minerals needed for healthy red blood cell production, B Vitamins, B12, Folate, Iron etc.. Is your medical team monitoring your Reticulocyte count? It might be worth getting a full iron study to see what it happening with your red blood cells.

Nick Cheruka Contributor
Nick Cheruka
Posted
19 hours ago, Linny H said:

Have been on a Gluten free diet since my diagnosis in June 2021. Was diagnosed with DH last fall and started taking dapsone. This medication is affecting my red blood cells and I am experiencing fatigue and minor dizziness from time to time. I plan to discuss stopping the dapsone with my dermatologist at the end of the month. Anyone else taking dapsone? How long? Side effects? Why isn't my diet preventing this condition?

Thanks for any advice!

Are you sure your not ingesting gluten in some way you may not be aware of? Did you get diagnosed with Celiacs per intestinal biopsy? DH is the skin form of Celiacs so maybe your ingesting hidden gluten! Good Luck! I have the flare ups periodically with DH and Celiacs even on a strict gluten-free diet for over 20yrs! It’s unfortunately hidden in many ingredients, which can make it challenging to stay gluten free 24/7! Your not alone in the life of a Celiac! Stay Strong!😎

Linny H Rookie
Linny H
Posted
  • Author

Thanks so much for your reply. I was diagnosed via endoscopy. Definitely could be getting some hidden gluten as I'm still working thru careful label reading. Dapsone scares me. I don't like what it's doing to my blood work. 

Linny H Rookie
Linny H
Posted
  • Author
11 hours ago, Rogol72 said:

Are you eating oats and dairy? If so, cutting them out should help. I found that eating a mostly AIP diet is the only thing that works keeping my DH in check. Coeliacs with DH are a lot more sensitive to trace amounts of gluten. Dapsone is a broad spectrum antibiotic, so taking a probiotic to counter the antibiotic side effects should help.

I use Dapsone sparingly as needed. It artificially lowers HA1C. I make sure that I get all the vitamins and minerals needed for healthy red blood cell production, B Vitamins, B12, Folate, Iron etc.. Is your medical team monitoring your Reticulocyte count? It might be worth getting a full iron study to see what it happening with your red blood cells.

Thanks for the response. Lots of great info. I stopped oats about a year ago. I didn't notice a problem with dairy but I will look into the auto immune diet you referenced.

KyleL Newbie
KyleL
Posted
On 8/1/2023 at 4:44 PM, Linny H said:

Have been on a Gluten free diet since my diagnosis in June 2021. Was diagnosed with DH last fall and started taking dapsone. This medication is affecting my red blood cells and I am experiencing fatigue and minor dizziness from time to time. I plan to discuss stopping the dapsone with my dermatologist at the end of the month. Anyone else taking dapsone? How long? Side effects? Why isn't my diet preventing this condition?

Thanks for any advice!

Good morning, I also was diagnosed with DH. I have been on Dapsone for two years. My RBC, Hemoglobin and Hematocrit have been low for some time now. My Doctors don’t seem to concerned about it. I have tried to get off the Dapsone but when I do, I have a bad flare up. I am also on a strict gluten-free diet.

knitty kitty Grand Master
knitty kitty
Posted

Dermatitis Herpetiformis outbreaks can be triggered by iodine. High levels of Iodine are found in dairy products and shellfish and iodized table salt.

I've cut out dairy, avoid shellfish and switched to Pink Himalayan salt, and my DH flares cleared up. 

Niacin (flushing form of Vitamin B3) or Niacinamide (nonflushing form of B3) helps tremendously in clearing DH skin bumps.  

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

Celiac.com Sponsor (A8-M):


Rogol72 Community Regular
Rogol72
Posted

Excess iodine from eggs has been reported to flare DH also. Here's a case report ... https://www.sciencedirect.com/science/article/pii/S2352512622004350

@KyleL, Have you noticed any other side effects of taking Dapsone (beyond it's effect on RBCs)? I'm curious since there's so few people on it here.

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
 Share
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. knitty kitty
      - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      361

      Terrible Neurological Symptoms

      My dad had an Abdominal Aortic Aneurysm. Fortunately, it was discovered during an exam. The doctor could feel my dad's heart beating in his stomach. The aneurysm burst when the doctor first touched it in surgery. Since he was already hooked up to the bypass machine, my dad survived ten more years. Close call! Triple A's can press on the nerves in...
    2. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to HectorConvector's topic in Related Issues & Disorders
      361

      Terrible Neurological Symptoms

      You have an odd story there. To me, the mechanical trigger suggests a mechanical problem and lower leg pain is a classic sciatica symptom. The fact that the clear mechanical linkage is no longer there does not take away from the fact that it was - maybe something shifted and the simple alignment is no longer there. There's also a good chance I am wrong and...
    3. HectorConvector
      - HectorConvector replied to HectorConvector's topic in Related Issues & Disorders
      361

      Terrible Neurological Symptoms

      Oddly this effect has gone now, just happened yesterday evening, the nerve pain is now back to its usual "unpredictable" random self again - but that was the only time I ever had some mechanical trigger for it, don't know why! There's no (or wasn't) actual pain in my neck - it was inside the leg, but when I looked down, now though, the leg pain just comes...
    4. HectorConvector
      - HectorConvector replied to HectorConvector's topic in Related Issues & Disorders
      361

      Terrible Neurological Symptoms

      I had MRI scan a few years ago showing everything normal, and now it's no longer triggering the nerve pain when I bow my head today - it only seemed to happen yesterday, and that was the only time it happened! Just seemed weird as no movement has caused my usual nerve pain before. It's normally just random.
    5. AutomatedGlutenEjector
      - AutomatedGlutenEjector commented on Scott Adams's article in Latest Research
      71

      COVID-19 a Possible Trigger for Celiac Disease in Those with Genetic Risk

      This hypothesis certainly lines up with my experience. Avoided getting Covid until August 2022. Celiac diagnosis three months later, and they think they caught it early (not a ton of damage in my EGD). I'd suspected the connection before, so it's nice to see researchers are interested in this question.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,062
    • Most Online (within 30 mins)
      10,442
    AutomatedGlutenEjector
    Newest Member
    AutomatedGlutenEjector
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
    • Aretaeus Cappadocia
      Terrible Neurological Symptoms

      By Aretaeus Cappadocia · Posted

      You have an odd story there. To me, the mechanical trigger suggests a mechanical problem and lower leg pain is a classic sciatica symptom. The fact that the clear mechanical linkage is no longer there does not take away from the fact that it was - maybe something shifted and the simple alignment is no longer there. There's also a good chance I am wrong and it's something else entirely. @Scott Adams's mention of shingles is interesting. It seems possible but unlikely to me, but who knows. However, I am writing here to reinforce the idea of getting the shingles vaccine. Ask anyone who has ever had shingles and they will bend your ear telling you how bad it is. I watched my wife go through it and it scared the bejeebers out of me. Even if you had the chicken pox vaccine, you really want to get the shingles vaccine.
    • HectorConvector
      Terrible Neurological Symptoms

      By HectorConvector · Posted

      Oddly this effect has gone now, just happened yesterday evening, the nerve pain is now back to its usual "unpredictable" random self again - but that was the only time I ever had some mechanical trigger for it, don't know why! There's no (or wasn't) actual pain in my neck - it was inside the leg, but when I looked down, now though, the leg pain just comes and goes randomly as before again.
    • HectorConvector
      Terrible Neurological Symptoms

      By HectorConvector · Posted

      I had MRI scan a few years ago showing everything normal, and now it's no longer triggering the nerve pain when I bow my head today - it only seemed to happen yesterday, and that was the only time it happened! Just seemed weird as no movement has caused my usual nerve pain before. It's normally just random.
    • akebog
      Fusilli Pizzeria, Miller Place, NY

      By akebog · Posted

      Very good pizzeria with small dining room in back of the restaurant. The owner's daughter has celiac & they have gluten free pizza & a gluten free menu. Some items from the regular menu can be made gluten free also. They have a lunch menu which we ordered from & my chicken with spinach & mozzarella over gluten-free penne was delicious. They also have Tuesday night pasta specials & Thursday night chicken pasta specials. We plan on going back for dinner soon.
×
×
  • Create New...