Jump to content

  • You are not alone. Join Celiac.com for trusted gluten-free answers and forum support.



  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

Don't Try This At Home...

FranDaMan

By FranDaMan
in Dermatitis Herpetiformis

Recommended Posts

FranDaMan Apprentice
FranDaMan
Posted

Infrequent poster but very frequent lurker. Diagnosed via skin biopsy in January 2009. DH is my only "obvious" symptom.

 

So, having been gluten-free for nearly 4 years we were going to Europe in the fall of 2012. I'd decided I would indulge myself as it will likely be my last trip to Europe with retirement approaching and the need to really tighten the grip on the pennies. I did bring a supply of Dapsone just in case but I was really concerned with a total meltdown since I'd been clean for all that time. Would I get the full on stomach response? Brain fog? I didn't know and thankfully the answer was no. (Again, don't try this at home!) It was nice to drink a real beer and eat real baked goods even though I knew in my heart it was a fools errand.

 

Anyway, I escaped without any gastro issues that I know of and immediately returned to total gluten-free. The expected rash DID arrive about three weeks later. I thought that was quite a bit of time but there it was. I went through the Dapsone I'd saved from my issues in 2009 and recently got a fresh supply as it is an ongoing thing. I find that if I use a full dose for a few days I can then go to a half dose with no issues. (Unfortunately I ran out of the old a week before I could get the new. I now remember just how awful DH can really be.)

 

My question here is really about the Dapsone. I know for me it knocks the itch down in 24 hours and very soon after the rash begins to subside. What I don't know is whether it is doing any healing for the innards or just the skin? Does anyone have info on that?

 

Thanks in advance.

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

Celiac.com Sponsor (A8-M):


squirmingitch Veteran
squirmingitch
Posted

No, Dapsone does not do any healing of your gut at all. The Dapsone only makes the dh not present --- that is all. There is a person who has posted on here who was put on Dapsone since childhood & was on it for 20 years BUT was NEVER told the dh was due to eating gluten. She was never told to quit eating wheat much less quit gluten. She went on for 20 years eating gluten but the Dapsone kept the rash from presenting. Then one day she discovered that she needed to be gluten free all along & found this site.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. cristiana
      - cristiana replied to HelloFlowersGoodbyeFlour's topic in Related Issues & Disorders
      6

      Anyone else get a lot of upper respiratory infections?

      Definitely worth speaking to your gastroenterologist about this. My own told me that by using Gaviscon a barrier forms over the contents of the stomach and stops gas and acid irritating the throat. In fact, he said to me that because I found relief using Gaviscon that was a very clear indicator that reflux was the cause of that particular issue. A wedge...
    2. HelloFlowersGoodbyeFlour
      - HelloFlowersGoodbyeFlour replied to HelloFlowersGoodbyeFlour's topic in Related Issues & Disorders
      6

      Anyone else get a lot of upper respiratory infections?

      I did get the pneumonia vaccine about 4 years ago. I had this amazing allergist who did all those vitamin deficiencies test and told to get that vaccine. Unfortunately she retired. I haven’t been to an allergist in a few years, I’m not sure what my levels are now. I did have a pulmonologist who wasn’t concern and said I seemed fine to him that I was young...
    3. HelloFlowersGoodbyeFlour
      - HelloFlowersGoodbyeFlour replied to HelloFlowersGoodbyeFlour's topic in Related Issues & Disorders
      6

      Anyone else get a lot of upper respiratory infections?

      Yes I do have acid reflux. I’m not on anything for it at the moment. I sometimes wonder if that’s what it could be because I get heart burn every night. I may revisit my gastrointestinal doctor again. Thanks for the reply
    4. cristiana
      - cristiana replied to HelloFlowersGoodbyeFlour's topic in Related Issues & Disorders
      6

      Anyone else get a lot of upper respiratory infections?

      Hi @HelloFlowersGoodbyeFlour I wonder if you suffer from reflux, as if you do, you may find it could also be irritating your airways. I shall explain: I have to use a blue inhaler from time to time, and it seems to be related to reflux. Never had any trouble before my coeliac diagnosis, the reflux seemed to be something that developed following...
    5. trents
      - trents replied to HelloFlowersGoodbyeFlour's topic in Related Issues & Disorders
      6

      Anyone else get a lot of upper respiratory infections?

      Since initially getting your D checked a few years ago, has it since rebounded to normal levels? Sounds like at some point you got it checked again.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,124
    • Most Online (within 30 mins)
      10,442
    HelloFlowersGoodbyeFlour
    Newest Member
    HelloFlowersGoodbyeFlour
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Upcoming Events

  • Posts

    • cristiana
      Anyone else get a lot of upper respiratory infections?

      By cristiana · Posted

      Definitely worth speaking to your gastroenterologist about this. My own told me that by using Gaviscon a barrier forms over the contents of the stomach and stops gas and acid irritating the throat.  In fact, he said to me that because I found relief using Gaviscon that was a very clear indicator that reflux was the cause of that particular issue.   A wedge pillow will really help with this - or raising the top bed legs with bricks.
    • HelloFlowersGoodbyeFlour
      Anyone else get a lot of upper respiratory infections?

      By HelloFlowersGoodbyeFlour · Posted

      I did get the pneumonia vaccine about 4 years ago. I had this amazing allergist who did all those vitamin deficiencies test and told to get that vaccine. Unfortunately she retired.  I haven’t been to an allergist in a few years,  I’m not sure what my levels are now. I did have a pulmonologist who wasn’t concern and said I seemed fine to him that I was young etc. But yes I think I should at the very least get a different opinion. Thank you for your reply 
    • HelloFlowersGoodbyeFlour
      Anyone else get a lot of upper respiratory infections?

      By HelloFlowersGoodbyeFlour · Posted

      Yes I do have acid reflux. I’m not on anything for it at the moment. I sometimes wonder if that’s what it could be because I get heart burn every night. I may revisit my gastrointestinal doctor again. Thanks for the reply  
    • cristiana
      Anyone else get a lot of upper respiratory infections?

      By cristiana · Posted

      Hi @HelloFlowersGoodbyeFlour I wonder if you suffer from reflux, as if you do, you may find it could also be irritating your airways.  I shall explain: I have to use a blue inhaler from time to time, and it seems to be related to reflux.  Never had any trouble before my coeliac diagnosis, the reflux seemed to be something that developed following a holiday to France in 2019, where I had been exposed to gluten.    The reflux continued into the autumn and winter, my throat itched to begin with, particularly after meals, but it then that feeling of irritation seemed to spread to my lungs.  I even found it difficult to breathe on occasion. What stopped it in its tracks was using a wedge pillow at night, following a reflux diet (you can find them online), not eating 2-4 hours before bed and also having a dose of Gaviscon Advanced at night, which forms a barrier so that acid/food can't go back up your esophagus.  The throat irritation faded, and then I found it easier to breathe again. Just mentioning in case it could be a contributing factor.
    • trents
      Anyone else get a lot of upper respiratory infections?

      By trents · Posted

      Since initially getting your D checked a few years ago, has it since rebounded to normal levels? Sounds like at some point you got it checked again.
×
×
  • Create New...