Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Medication?
0

8 posts in this topic

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!

0

Share this post


Link to post
Share on other sites


Ads by Google:

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. : ;)

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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. :(

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites




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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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
0

  • Forum Statistics

    • Total Topics
      104,385
    • Total Posts
      920,613
  • Topics

  • Posts

    • Squirmingitch, I forgot to mention best of luck to you during the storm! I hope you are safe and that your home isn't impacted too badly! I'm on the coast in SC so we will see some storms from it but nothing near as bad as what you will have. Take care and good luck.
    • SquirmingItch, I really appreciate you gathering info for me! To answer your questions, yes, I'm on Dapsone now and have been on it for about 4.5 weeks. I have been gluten free for the same amount of time. I started on 50 mg of Dapsone which didn't seem to help much. I spoke to my doctor about it and after about a week she raised it to 100 mg. Since then I did notice a huge improvement in both my rash and itch. I no longer have any active rashes and my itching isn't completely gone but it's very minimal. I have been getting weekly blood tests done and will soon be moving to monthly.  My DH skin biopsy was done before the gluten free diet and Dapsone. My results for the skin biopsy came back as inconclusive, but even with those results, my doctor was convinced I had DH. I specifically asked her about the fact that she took the biopsy directly from the lesion rather than next to it and if that affects the result. Her explanation was that if it's a fresh enough lesion that isn't scratched, there should be IgA antibodies present. But she said that an inconclusive result isn't surprising because the IgA antibodies come and go from the skin so quickly that it can be very difficult to get a positive result, even in someone who is positive.  That's when she decided to run the celiac blood panel on me. And even though those results came back positive for the deamidated gliadin and negative for tTg, she still is very convinced that I have DH. I am happy that my doctor seems to be certain, but I would just feel better if the results were more definitive. The one other thing I am waiting on is I have been asked to attend grand rounds at the local academic hospital in 2 weeks. I guess grand rounds is where all of the academic dermatologists and dermatopathologists get together to review certain complicated cases. They will meet with me, review all of my pictures, biopsies and blood tests. My situation has been so complicated so they asked me to come. I am hoping maybe then I will get some more answers. 
    • It sure is, it really is. 
    • shellyb, I have info. for you & you may yet be able to get an official dx from your dermatologist as she sounds like she would be willing to learn. If you are dx'd with dh it is definitive & no other testing is needed. You don't need to see a GI. Im in FL & have had a long day watching Tropical Storm Hermine & making preparations for it's track which is over where I live. I'm tired! I will have links for you to reputable medical info. on the rash but it make take me till tomorrow or even longer if we lose power.  I'll be back as soon as I can. Question: You're on Dapsone now? How long have you been on it? How is it working for you? Are you getting the proper testing at regular intervals to make sure it isn't doing bad things to you? Were you gluten free before the skin biopsy?
    • Thank you so much for your quick response, GFinDC. While I wouldn't be completely opposed to another skin biopsy, I already had 4 done (3 were done prior to my dermatologist suspecting DH) so I don't love the idea of  yet another hole and scar on my body. Plus, fortunately I don't have any fresh lesions now, which I believe is needed for the biopsy. I wish I would have known to see a GI before going gluten free but I was so desperate to get any relief that I started that and Dapsone as soon as my doctor mentioned it to me.  My rash is definitely symmetrical and I have it in all of the "classic" DH spots although it basically spread over my entire body. As much as I'd like a more formal diagnosis, I really don't think I can go through all of that again. It was so bad that not only was I getting no sleep but I had to change my sheets every morning because there was blood all over them. Sorry, TMI. The worst part is that this all developed during my ninth month of pregnancy and got much worse after I delivered my baby. So not only was I dealing with this insanely itchy rash but I had a newborn and a toddler to take care of.  My daughters' pediatrician did mention doing DNA testing on me first and then my daughters to see if there's any concern that they may be susceptible. I may just go that route for now. I was just curious if others have had similar test results to mine and how did their doctors treat it? Thanks again!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,455
    • Most Online
      1,763

    Newest Member
    JLeigh
    Joined