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Don't Try This At Home...

FranDaMan

By FranDaMan
in Dermatitis Herpetiformis

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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.

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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.

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