Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Medication?

FreyaUSA

By FreyaUSA
in Dermatitis Herpetiformis

Recommended Posts

FreyaUSA Contributor
FreyaUSA
Posted

My teenage son has dh. Since going gluten-free 5-6 months ago, his skin has pretty much cleared up, almost completely. Unfortunately, since going gluten-free, whenever he accidentally gets glutened, his reactions have become increasingly more severe. Yesterday, he suddenly broke out in a sweat, starting getting a migraine, developed a full body rash of tiny red dots (from his ankles to his hairline) AND the usual patches of "typical" itchy dh spots have become much MUCH larger (he also gets all the GI fun too, lucky kid :( ) He was so miserable last night! Does anyone know of anything out there to help lessen the dh effects? We've not been to a dermatologist, but we will if it would be recommended (but I've been unimpressed with the knowledge of most doctors concerning celiac disease.) Any help would be most appreciated!

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

Celiac.com Sponsor (A8-M):


bratcat Apprentice
bratcat
Posted

When I was diagnosed as celiac my dr told me about the rash.He did not know that I had had the rash for 8 months.I did not know what it was.He gave me a scrip for "lotrosone cream".It was wonderful.It helped heal and stop the itch.Maybe this can help your son.This has to be really hard for a child.You have my sympathy.Hope this helps. : ;)

Maggie1956 Rookie
Maggie1956
Posted

Hi Freya,

I don't know of any creams to help your son's itch, but I'd like to let you know that I'm thinking and praying for him, and you.

I have a small patch on my ankle and it drives me almost mental when it is at it's worst.

Maggie

FreyaUSA Contributor
FreyaUSA
Posted
  • Author

Thank you, Bratcat, for the cream suggestion. I'm going to give the doctor a call today and get a prescription. And, thank you Maggie and Bratcat for your kind thoughts! Yesterday he went to school, but he's home again today. He also gets very depressed from the gluten (when otherwise he's a really upbeat, together kid) and, though he might "feel" good enough to go to school, last night he had an emotional breakdown and I gave him an extra day home. :(

  • 2 weeks later...
AustinDH Newbie
AustinDH
Posted

I know everyone here suggests being totally gluten free, which I support and which I am doing. But I have to say that Dapsone was extremely effective in treating my DH and starts to work within 24 hours. I never had any side effects whatsoever, even though I know there can be severe side effects. The side effect that is so bad is that it could make your white or red blood cells (can't remember which) "explode" which results in anemia and who knows what else. But, they check your blood to make sure you don't suddenly become anemic - that would be the sign that you're having the side effect.

I would ask a doctor or dermatologist for Dapsone. It will help when he has "accidents" w/gluten. He can have his blood drawn once a month for a few months to make sure he's not having the side effects. Like I said, I never had any problems with it and was much happier using the Dapsone than being totally gluten free. I would be using the Dapsone if I were not trying to get pregnant.

Good luck!

  • 3 weeks later...
FreyaUSA Contributor
FreyaUSA
Posted
  • Author

AustinDH, do you have to take the dapsone every day even when not having a reaction?

lovegrov Collaborator
lovegrov
Posted

How often you have to take dapsone and how much depends on the individual. I took mine only every third day or so even when I was eating gluten every day. The tiny red dots don't sound like DH, though, at least not the way I had it. You sure he's not also having an allergic reaction?

If your son took the dapsone only when he starts an outbreak, he'd still suffer some but not as long and not as much. The DH should cease to be a problem after he's been strictly gluten-free for a while.

richard

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

Celiac.com Sponsor (A8-M):


FreyaUSA Contributor
FreyaUSA
Posted
  • Author

The little red dots aren't technically DH. It had been diagnosed as keratosis pilaris some years ago. However, since they flare up whenever he eats gluten, they are somehow gluten related (who knows, he may have a wheat allergy on top of celiac disease.) But, he does have the regular DH breakout reactions, too, on his hips, knees and "other areas." (I didn't press for more info, I could see the ones on his hips though, NASTY!) Injury to insult, I suppose. The little dots don't seem to bother him much (except visually.) The DH spots drive him crazy though.

I'd be willing to get the dapsone if it wasn't something he had to take all the time, but just during outbreaks. Thanks for the info, Richard! Any shortening of reaction time would be wonderful for him.

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. Scott Adams
      - Scott Adams replied to Skydawg's topic in Related Issues & Disorders
      2

      Gluten exposure when trying to conceive

      Your doctor's recommendation to wait three months is very sound and aligns with general advice for celiac disease. While the acute GI symptoms resolve quickly, the autoimmune response and intestinal inflammation can linger, impairing nutrient absorption crucial for early fetal development. This three-month window allows your body to calm the immune response...
    2. Celiacpartner
      - Celiacpartner replied to Celiacpartner's topic in Food Intolerance & Leaky Gut
      2

      Could this be a new intolerance

      He’s noticed it after having a few different kinds of nuts and nuts on top of a gluten free nut bar. and it’s happened after having some fresh caught fish, and tonight from packaged plain salmon from the supermarket. He has stomach cramps and feels the need to vomit to try and relieve the symptoms.
    3. trents
      - trents replied to Celiacpartner's topic in Food Intolerance & Leaky Gut
      2

      Could this be a new intolerance

      Welcome to the forum, @Celiacpartner! Does this happen with all nuts and all fish or just certain kinds? And are we talking about products that are advertised as gluten-free eaten at home or things served in a restaurant?
    4. Celiacpartner
      - Celiacpartner posted a topic in Food Intolerance & Leaky Gut
      2

      Could this be a new intolerance

      Hello. My husband was diagnosed with celiac disease 30yrs ago. He has a gluten free diet, with the odd bit of contamination when eating out or eating something that says may contain, which he probably shouldn’t but he seems to tolerate his diet ok. The last few times he has eaten fish and larger servings of nuts he has noticed stomach pains like he used t...
    5. trents
      - trents replied to Skydawg's topic in Related Issues & Disorders
      2

      Gluten exposure when trying to conceive

      My reaction to a gluten bolus exposure is similar to yours, with 2-3 hours of severe abdominal cramps and intractable emesis followed by several hours of diarrhea. I don't necessarily equate that one large exposure to gluten with significant intestinal lining damage, however. I think it's just a violent reaction to a what the body perceives to be a somewhat...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,348
    • Most Online (within 30 mins)
      7,748
    Berin
    Newest Member
    Berin
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Gluten exposure when trying to conceive

      By Scott Adams · Posted

      Your doctor's recommendation to wait three months is very sound and aligns with general advice for celiac disease. While the acute GI symptoms resolve quickly, the autoimmune response and intestinal inflammation can linger, impairing nutrient absorption crucial for early fetal development. This three-month window allows your body to calm the immune response and for your gut to fully heal, ensuring you are in the best possible nutritional health for conception and pregnancy. In the meantime, focus on hydrating, eating nourishing, easily digestible foods, and resting—your body needs time to recover. It's a frustrating delay, but it's the best step for a healthy pregnancy.
    • Celiacpartner
      Could this be a new intolerance

      By Celiacpartner · Posted

      He’s noticed it after having a few different kinds of nuts and nuts on top of a gluten free nut bar. and it’s happened after having some fresh caught fish, and tonight from packaged plain salmon from the supermarket. He has stomach cramps and feels the need to vomit to try and relieve the symptoms. 
    • trents
      Could this be a new intolerance

      By trents · Posted

      Welcome to the forum, @Celiacpartner! Does this happen with all nuts and all fish or just certain kinds? And are we talking about products that are advertised as gluten-free eaten at home or things served in a restaurant?
    • Celiacpartner
      Could this be a new intolerance

      By Celiacpartner · Posted

      Hello. My husband was diagnosed with celiac disease 30yrs ago. He has a gluten free diet, with the odd bit of contamination when eating out or eating something that says may contain, which he probably shouldn’t but he seems to tolerate his diet ok. The last few times he has eaten fish and larger servings of nuts he has noticed stomach pains like he used to get when he eats gluten. After 30yrs of getting it right and knowing what he can and can’t have with essentially no major instances, this has thrown us. Could this be a new intolerance or an allergy and has it happened to anyone else after so many years? thanks
    • trents
      Gluten exposure when trying to conceive

      By trents · Posted

      My reaction to a gluten bolus exposure is similar to yours, with 2-3 hours of severe abdominal cramps and intractable emesis followed by several hours of diarrhea. I don't necessarily equate that one large exposure to gluten with significant intestinal lining damage, however. I think it's just a violent reaction to a what the body perceives to be a somewhat toxic substance that I am no longer tolerant of because I have quit exposing myself to it regularly. It's just the body purging itself of it rather than an expression of significant damage. Before diagnosis, when I was consuming gluten daily, I had little to no GI distress. I was, for the most part, a "silent celiac". The damage to my small bowel lining didn't happen all at once but was slow and insidious, accumulating over a period of years. The last time I got a big shot of gluten was about three years ago when I got my wife's wheat biscuits mixed up with my gluten-free ones. There was this acute reaction after about two hours of ingestion as I described above. I felt washed out for a few days and fully recovered within a week or so.  Now, I'm a 74-year-old male. So, I'm not worried about being pregnant. And I don't want to contradict your physicians advice. But I just don't think you have done significant damage to your small bowel lining by one episode of significant gluten ingestion. I just don't think it works that way.
×
×
  • Create New...