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hippo33

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can anyone tell me if dh goes away after time on dapsone,will i eventually be able to eat gluten

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can anyone tell me if dh goes away after time on dapsone,will i eventually be able to eat gluten

I had a rash that had all the hallmarks of DH... had it for over 10 months and no topical provided relief. I never sought formal diagnosis (long story) but went gluten free 8/10/09. Within a week or so I was already seeing a difference, in that the topicals that did nothing before, now provided relief.

When I had a couple of pasta meals on a weekend away from home, I experienced an exacerabation of the rash.

Now, 6+ months out on the gluten-free diet, I am almost completely healed, save for the leftover purple spots.... I never went on dapsone. But from what I have read it has some undesirable side effects in the long term.

Yes, your DH may be greatly helped while you are on dapsone, and I am guessing you are currently adhering to a gluten free diet.

So what will happen if you go back to gluten??? Maybe - and others of more experience will correct me here - you will be ok as long as you stay on the dapsone. Maybe.

But do you really want to stay on a drug with known side effects forever? If you don't stay on a gluten free diet, that's what it will take.

Once you stop taking the drug, if you are still eating gluten, I would bet you a hundred bucks your DH will return to haunt you.

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I had a rash that had all the hallmarks of DH... had it for over 10 months and no topical provided relief. I never sought formal diagnosis (long story) but went gluten free 8/10/09. Within a week or so I was already seeing a difference, in that the topicals that did nothing before, now provided relief.

When I had a couple of pasta meals on a weekend away from home, I experienced an exacerabation of the rash.

Now, 6+ months out on the gluten-free diet, I am almost completely healed, save for the leftover purple spots.... I never went on dapsone. But from what I have read it has some undesirable side effects in the long term.

Yes, your DH may be greatly helped while you are on dapsone, and I am guessing you are currently adhering to a gluten free diet.

So what will happen if you go back to gluten??? Maybe - and others of more experience will correct me here - you will be ok as long as you stay on the dapsone. Maybe.

But do you really want to stay on a drug with known side effects forever? If you don't stay on a gluten free diet, that's what it will take.

Once you stop taking the drug, if you are still eating gluten, I would bet you a hundred bucks your DH will return to haunt you.

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thanks for the info,my problem is that ive been on the diet for 6 months and i still get it prety bad,there are little things that i must be missing but its fustrating because i never know what i ate that did it,the reason i asked if it was long term was because im in the army and right now i cant go to the field because i cant eat the food they provide,i know i drink a lot of coke and coke zero but coke says it is gluten free so i dont know im lost i just want to live a normal life with out having the rash on my face i guess im just really sensitive to gluten,maybe if i take the dapsone for a bit it will help me a bit we will see,thanks

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thanks for the info,my problem is that ive been on the diet for 6 months and i still get it prety bad,there are little things that i must be missing but its fustrating because i never know what i ate that did it,the reason i asked if it was long term was because im in the army and right now i cant go to the field because i cant eat the food they provide,i know i drink a lot of coke and coke zero but coke says it is gluten free so i dont know im lost i just want to live a normal life with out having the rash on my face i guess im just really sensitive to gluten,maybe if i take the dapsone for a bit it will help me a bit we will see,thanks

Hippo, I certainly can hear your pain. You're in a difficult situation to deal with since you're fairly captive to the food that is provided you. It stands to reason that even though you feel you have been on a gluten-free diet for 6 months you are most likely continuing to consume hidden gluten in your food. I used to have intermittent breakouts of DH on one butt cheek in the same place and it usually correlated with having eaten something I didn't realize had wheat gluten in it. I pretty much could count on it when dining out if I wasn't diligent about asking questions and sticking to what I knew was gluten-free. Good rule:When in doubt, do without. I haven't had a out break for months now and it is because I cook 90% of my own food at home and when dining out, I'm super careful. I have never taken Dapsone due to various side effect risks I'm not willing to experience. People who have never experienced DH have no idea what hell it can be.

In all the reading I've done over the past year and a half, one thing sticks in my mind when it comes to gluten intolerance. "Your never just a little pregnant. You either are or you are not". That translates into if you're gluten intolerant, you are gluten intolerant all day, every day. You can't eat a little bit here and there and hope to see relief. It's just not going to happen. I would suggest that you research deeper into what foods you are eating and check for wheat gluten. There are great sites out there that list hidden gluten (www.livingwithout.com is one) that you should be on the lookout for. The more you can eliminate the better your chances of improvement are. Don't give up, there is hope. Ask for ingredient info (if you haven't already) on all the foods that you are provided so you can begin to find the culprits. You must be proactive or you will remain in the spot you're in.

My quality of life changed one month after going gluten-free/CF. My only regret is that it took 45 years to figure it out!

Went gluten-free Nov.'08

Went Dairy Free Dec.'08

Officially diagnosed Gluten/Casein Nov.'09

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