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Medication Other Than Dapsone? Please Help!
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Hi. After itching most of my life and being diagnosted with excema,dairy sensitivity, chronic hives.... I finally figured out I had DH last year at 38 yrs old. I was diagnosted through a blood test and then by gluten elimination. I am doing much better. The rash symptoms are much better. But I have good days and bad. I still suffer with the big itchy blisters to varying degrees. I am sooooo tired of looking like this. It has effected every part of my life. I broke down and took Dapsone. It gives me headaches that are not tolerable. I am looking for another medication. Can anyone recommend what has worked for you. I am desperate. :(

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OMG!!!!!!!!!!!!!!!!!!!

They screwed up when they wrote that! It says:

When dermatitis herpetiformis is well-controlled, attempts can be made to taper off dapsone and perhaps attempt a diet with gluten.

NOOOOOOOOOOOOOOOOOOOOOOO, you should NOT attempt a diet with gluten!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

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OMG!!!!!!!!!!!!!!!!!!!

They screwed up when they wrote that! It says:

When dermatitis herpetiformis is well-controlled, attempts can be made to taper off dapsone and perhaps attempt a diet with gluten.

NOOOOOOOOOOOOOOOOOOOOOOO, you should NOT attempt a diet with gluten!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I agree that's an erroneous statement but I linked to that to show alternative medical treatments.

And btw that's not the only stupid thing I've seen written about DH. The stupidity is incredulous and plentiful.

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I agree that's an erroneous statement but I linked to that to show alternative medical treatments.

And btw that's not the only stupid thing I've seen written about DH. The stupidity is incredulous and plentiful.

Oh, I understand completely. I wasn't saying you did a bad thing. Yes, stupid, stupid stuff written about dh even from some of the leading celiac centers. And contradictory! We get awfully down on derms but when you look at some of the erroneous info. out there; is it any wonder why they don't know what they are doing?

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Have you tried eliminating iodine yet? It can make all the difference!

Also, if the blistering continues, you might have it tested for staph. I recently went through months of having DH that wouldn't stop blistering...only to find out that the DH had become infected with staph. Staph has the same symptoms (blistering, peeling, and then more blistering and peeling).

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I was put on Dapsone for a short while, and couldn't tolerate it well at all and was taken off Dapsone. Now i am on an Immunosuppressant drug called Cellcept. My docs/derms all agree I have an Auto Immune disorder. Cellcept is what I am currently on, but I've only been on it three days. So far so good, but it's real early yet. I am hoping this and going Gluten Free will ease my problems.

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I was put on Dapsone for a short while, and couldn't tolerate it well at all and was taken off Dapsone. Now i am on an Immunosuppressant drug called Cellcept. My docs/derms all agree I have an Auto Immune disorder. Cellcept is what I am currently on, but I've only been on it three days. So far so good, but it's real early yet. I am hoping this and going Gluten Free will ease my problems.

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My dermatologist recommended Benadryl for the itch. Don't think it will have much effect on the rash per say but it should help reduce the itch at least. He gave me a prescription for a Benadryl type med but personally I prefer Zrytec, doesn't make you as sleepy and you can take it daily with out too much trouble.

You probably already know this but he also said a sign of DH is that it doesn't respond well to any steroid creams, unfortunately.

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    • I agree, it's very unlikely she doesn't have celiac disease.  Can you find a local celiac group to get a doctor recommendation from?  They might have the best idea of a local doctor who is familiar with celiac disease.  There is also a doctors sub-section of this forum which might help find one.  http://www.celiac.com/gluten-free/forum/6-celiac-disease-doctors/
    • Hi I'm newly diagnosed with coeliacs only 5 days ago so I have had 4 days gluten free , I felt more energised pretty quick but today have gone back to that sluggish feeling lethargic, could this be a withdrawal effect also did anyone have swelling whilst on gluten ?
    • Thank you! I will call and ask for a full panel and see where it leads!!
    • I think the idea of grinding your own at home stems from the thought that flavored coffees might be ground on the same machines.  The grinders in the grocery are not cleaned between uses.  However, I have not found a flavored coffee bean that had gluten, so it's probably not a real concern.  For coffee that comes from a factory ground, I wouldn't worry at all.   Machines would be cleaned between flavors and nothing but coffee could be made on the machines or even in the same building ( everything made would taste/ smell like coffee). if you still have doubts - I went to the International Celiac Disease Symposium a few years back.  This is held every few years in different countries for medical professionals that study and treat Celiac.  They present research, etc.  All food served was gluten-free.  We drank a lot of plain, already ground, coffee!  A lot!   Coffee is not on any lists as a gluten containing food.  Talking legitimate organizations - not some blogger or pseudo- science website.   After all this, if you still doubt that coffee is gluten free...... Then don't drink it!  It leaves more for me!    
    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
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