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

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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,766
    • Most Online (within 30 mins)
      7,748
    Angie howard
    Newest Member
    Angie howard
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      Testing for celiac

      By knitty kitty · Posted

      Welcome to the forum, @Bebee, Yes, Celiac Disease has genetic commonalities with MS, hypothyroidism, arthritis, Reynaud, and rosacea.   Usually a gluten challenge is done before endoscopy with biopsies taken,  however I would not recommend a gluten challenge before endoscopy with biopsies for you since you have been gluten free for so long and have so many concurrent autoimmune diseases.   You can still have the endoscopy with biopsy samples taken now.  After several months with dietary changes, you can have another to compare results and check that intestinal health has improved.   You can get a genetic test for Celiac disease which shares genetics with other autoimmune diseases that you have.  Eating gluten is unnecessary for genetic tests. For the rosacea, get checked for SIBO (Small Intestinal Bacterial Overgrowth) that could be causing gastrointestinal symptoms as well as causing skin issues.  Our skin is a reflection of our gastrointestinal health.     Following the Autoimmune Protocol Diet has been helpful in keeping my own rosecea, eczema, and dermatitis herpetiformis and other autoimmune diseases in check.   Be sure to be checked for nutritional deficiencies that occur easily in gluten free and dairy free diets. Keep us posted on your progress! References: Clustering of autoimmune diseases in patients with rosacea https://pubmed.ncbi.nlm.nih.gov/26830864/ And... Celiac disease and risk of microscopic colitis: A nationwide population-based matched cohort study https://pubmed.ncbi.nlm.nih.gov/36939488/
    • Bebee
      Testing for celiac

      By Bebee · Posted

      I am new here, I have been diagnosed with Microscopic Colitis (Lymphatic) years ago and have been gluten-free, DF since, but I still can have occasional bouts of diarrhea (still trying to figure that out).  I also have MS, Hypothyroid, Arthritis, Reynaud's and my rosacea has been acting up lately.  What treatment is suggested to help with rosacea?  I would like to know too if there is a test for celiac if you have been gluten-free?   Thank you, Barb    
    • bluebird2032
      Gluten free/ non dairy , low calorie pudding

      By bluebird2032 · Posted

      Gluten free/ non dairy , low calorie pudding ideas please?
    • K6315
      Newly gluten free… withdrawal?

      By K6315 · Posted

      Well, that's interesting. I am lactose intolerant and have been managing that for years. I'd be interested in seeing if that changes once I feel better from not eating gluten (one thing at a time for now, though). Helpful to hear about the avenin. I will do some digging and pose that to the dietitian. Grateful for your feedback.
    • kate g
      Nandos improper preparion celiac childrens food

      By kate g · Posted

      Recently my daughter ate in nandos harlow I rang in advance to speak about the celiac protocals and learned that childs portion chicken nandinos is cooked on the same grill as garlic bread even if they are celiac! Even if you clean it this is not good practise and will be making many children ill. I learnt adults butterfly chicken cooked on a grill purely for chicken.  This is fine and what we ordered however nandos need to take note of your practises for the safety of celiac children. my daughter has been ill from their nandinos chicken before and i emailed head office and they wouldnt accept responsibility 
×
×
  • Create New...