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Homebound With Dh

Fancy Nancy

By Fancy Nancy
in Dermatitis Herpetiformis

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Fancy Nancy Newbie
Fancy Nancy
Posted

Searching for advice and support from educated DHers. I was biopsied and diagnosed a month ago. I was started on Dapsone 100 mg a day and putting temovate cream on my blisters everywhere but my face. I keep getting worse and worse! I've been gluten free for a month. Haven't cheated once! My blistering is the worst on my face (jawline, forehead, nose, chin, at least 30-40 blisters) which is making me very depressed and self-conscious about going anywhere. I have also removed gluten products such as soap, lotions, makeup, etc. The blisters are also horrible on my scalp and I've had those since June, inside and outside my ears, shoulders, down my spine, knees, and a few elsewhere. I've tried to eliminate most iodine and don't use salt anymore. Now I read that dairy can aggravate it too! I have lost 10 pounds and am struggling to find things to eat. I recently went through a divorce and I believe all the emotional stress with beingn a new single mom of two difficult boys has brought out the DH. (I did begin to have sores last summer and, of course, no doctors made the connection). Anyone else experience no relief with Dapsone? Any other meds that have helped? I am very frustrated and not knowing where to go from here. How do I live with this without going batty? Thanking you in advance for any helpful suggestions or steps where to go from here.

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rosetapper23 Explorer
rosetapper23
Posted

I so understand your frustration--when I didn't know what DH or celiac was, I suffered terribly from DH on my face and neck. I was so embarrassed about being seen in public, I shopped for groceries in the middle of the night at 24-hour grocery stores. Children used to point at me and say, "Mommy, what's wrong with that lady's face?" I was mortified!

For me, I discovered that the dairy in my area was high in iodine. Years later, I found that organic milk didn't seem to contain iodine, and I've been able to drink milk and eat dairy products for years without the DH recurring. I used to get DH really bad in the summer because I ate a lot of ice cream--big mistake! Also, asparagus is high in iodine, and I love asparagus. However, nowadays I avoid it.

Is there any chance that you're being treated for hypothyroid? If so, the medication contains high levels of iodine. Because I've had to take thyroid meds for the past four years, I have a chronic rash across my shoulders and back that isn't DH, but it's surely the iodine that is causing it. (I continue to have an allergic reaction to it.)

Because your DH is not going away, it's either going to take time....or you are somehow getting gluten contamination (supplements? makeup? lipstick?). Once, I discovered that my husband had bought chili powder from a bulk bin at the supermarket, which he had placed in a used Gebhardt bottle, and it took me months to figure out what was causing my symptoms.

Hang in there--over time and with consistently avoiding gluten and iodine, things will get better for you. DH can take a long time to clear up.

cahill Collaborator
cahill
Posted

In addition to what rosetapper23 said I would add avoiding seafood and vitamins containing iodine will also help.

It is a long slow frustrating time but hang in there and know that many of us have been where you are and understand ((HUGS))

Fancy Nancy Newbie
Fancy Nancy
Posted
  • Author

In addition to what rosetapper23 said I would add avoiding seafood and vitamins containing iodine will also help.

It is a long slow frustrating time but hang in there and know that many of us have been where you are and understand ((HUGS))

Thanks for the responses! It is nice to hear from people who understand what I'm going through. I spent a lot of time at the store tonight searching for food. It takes so much longer reading every label! Sea salt is okay, right? Absolutely no iodine or salt? Dairy had been my saving grace when I cut gluten. I have tons of new blisters in my neck and the edge of my lips. Owie! My scalp and ears are full of them too. Oh, and inside my nose! I know to avoid seafood and I checked my vitamins. Any advice for my derm appointment on Tuesday? I want to come out of my appointment feeling hopeful. Thanks again!

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