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

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. par18
      - par18 commented on Scott Adams's article in Winter 2026 Issue
      5

      Why Celiac Diagnosis Still Takes Years—and How to Change That

      Exactly one size does not fit all. For some people who would not be compliant unless it was officially diagnosed going gluten-free first is not the answer. As far as the Celiac vs gluten intolerance vs NCGS the treatment but not necessarily the compliance for all three is the same. Avoid gluten. My biggest problem with the gluten challenge is the fact that...
    2. Scott Adams
      0

      Savory Gluten-Free Herb & Scallion Pancakes (Protein-Rich and Easy)

    3. melthebell
      - melthebell replied to melthebell's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Persistent isolated high DGP-IGG in child despite gluten-free diet

      That's interesting - that's a lot of gluten! I'll be very curious to see how my son responds to the gluten. In some ways, I guess having a strong reaction would tell us something? It's tough navigating this as a parent and having it be not so clear cut ;\
    4. trents
      - trents replied to JamieAnn's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Jersey Mike’s option: Gluten-free bread

      Welcome to the celiac.com community, @JamieAnn! Glad you had a good experience at your local Jersey Mike's. In the town I live in all we have is Subway and they stopped offering gluten free buns. So, I can't eat there anymore. Oh, more recently there has come to our town a Firehouse sub shop and, according to the Internet, they offer gluten free...
    5. JamieAnn
      - JamieAnn posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Jersey Mike’s option: Gluten-free bread

      Today, in Uniontown, PA, I ordered Jersey Mike’s Italian sub on gluten-free bread (paid extra for gluten-free) for my brother who hasn’t had a sub in yrs (neorological prob if consumes). He’s so happy! Their gluten-free bread is from a company that specializes in gluten-free products, some of which I’ve enjoyed before, so figured a sub would be good! Jersey...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,515
    • Most Online (within 30 mins)
      7,748
    SarahV54
    Newest Member
    SarahV54
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • melthebell
      Persistent isolated high DGP-IGG in child despite gluten-free diet

      By melthebell · Posted

      That's interesting - that's a lot of gluten! I'll be very curious to see how my son responds to the gluten. In some ways, I guess having a strong reaction would tell us something? It's tough navigating this as a parent and having it be not so clear cut ;\
    • trents
      Jersey Mike’s option: Gluten-free bread

      By trents · Posted

      Welcome to the celiac.com community, @JamieAnn!  Glad you had a good experience at your local Jersey Mike's.  In the town I live in all we have is Subway and they stopped offering gluten free buns. So, I can't eat there anymore. Oh, more recently there has come to our town a Firehouse sub shop and, according to the Internet, they offer gluten free buns but I haven't tried them yet. For super sensitive celiacs, cross-contamination in handling at these sub shops may also be a problem.
    • JamieAnn
      Jersey Mike’s option: Gluten-free bread

      By JamieAnn · Posted

      Today, in Uniontown, PA,  I ordered Jersey Mike’s Italian sub on gluten-free bread (paid extra for gluten-free) for my brother who hasn’t had a sub in yrs (neorological prob if consumes). He’s so happy! Their gluten-free bread is from a company that specializes in gluten-free products, some of which I’ve enjoyed before, so figured a sub would be good! Jersey Mike’s fast-food restaurant chain
    • cristiana
      Insomnia help

      By cristiana · Posted

      Thank you @knitty kitty x
    • trents
      Persistent isolated high DGP-IGG in child despite gluten-free diet

      By trents · Posted

      Most recent gluten challenge guidelines call for the consumption of at least 10g of gluten (about the amount in about 4-6 slices of wheat-based bread) for at least 2 weeks.  When celiacs have been on gluten free diets for long periods of time, they often find that when they consume a good amount of gluten, they react much more strongly than they did before going gluten free. They have lost all tolerance to the poison they had when consuming wheat products regularly. That is certainly the case with me. A couple of years ago I accidentally consumed a wheat biscuit my wife had made thinking it was a gluten free one and it made me violently ill. So, I mention that as I don't know if your son has started the gluten challenge yet.
×
×
  • 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.