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Got A Diagnosis

jeannine

By jeannine
in Dermatitis Herpetiformis

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jeannine Apprentice
jeannine
Posted

I went back to my derm today. He is a resident and always needs to have someone else come in. Well, today he was able to bring in 2 doctors, both with experience with DH. They agreed, with out a doubt, that this evil, evil rash is DH. They told my doc to take 2 biopsies to make sure. They gave me some numbing ointment (heavy duty stuff) and said the biopsy will be looked at here in San Antonio and should have the labs back in a week. At that point, I should be able to start dapsone. I go back to gastro on 1 May to get the results of my duodenal biopsy.

The derm told me to start the gluten-free diet immediately.

I'm glad to finally have an answer (even if it did take 18 months!)

Jeannine

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RoseTapper Newbie
RoseTapper
Posted

Jeannine,

I'm glad you were able to finally get a correct diagnosis! That said, you might consider whether or not you would like to immediately jump into taking Dapsone. It can come with some pretty heavy-duty side effects. Have you considered going on a gluten-free diet to see if the DH will clear up? Mine began healing the day after I corrected my diet and only reappears when I'm accidentally glutened. If the DH doesn't clear up, then you still have the Dapsone option. Just my two cents.

jeannine Apprentice
jeannine
Posted
  • Author

RoseTapper, I'll see how it goes with the gluten-free and I am hoping that the rash will clear on it's own. I originally broke out 18 months ago so I'm not sure how long it will take with the diet alone. It is getting hot here in Texas and I want to be able to wear shorts :) At least I'll have a week before I talk to my doc again to see if I notice any change at all with the rash.

Thanks for your reply! I'm glad to hear that someone noticed an immediate improvment for dh with the diet alone- that gives me hope!

Jeannine

flourgirl Apprentice
flourgirl
Posted

Hi there! I know just how awful DH can be! Mine cleared up pretty quickly when I started the diet. I DO, however, get flair ups by taking Ibuprofen....or if I eat anything salty. We switched to kosher salt (no iodine) and that helps. I can't have any salty chips or snacks, tho' because I get those itchy blisters! You may want to watch out for those things. I'm hoping that when my skin clears I can eventually be able to use salt. Good luck healing.

ravenwoodglass Mentor
ravenwoodglass
Posted

Glad you got a diagnosis. I will agree with the others that you should do the diet before the drug. I had severe DH, my face, scalp, arms, legs, personal areas, back you name it I had blisters in one stage or another and they took literally months to heal. From day one of the diet I started to heal, by a week I had no new outbreaks coming and within 3 months my biggest sign of accidental gluten was that the rash would reappear for a few DAYS. It usually takes about 2 years for all of the antibodies to leave the skin, your skin will be extra sensitive to CC during this time, which I found helpful. I have found that once the antibodies were gone even when I do get glutened I only get one maybe two tiny little blisters. Do drop out iodized salt and be really sure to check shampoos, lotions anything that comes into contact with your skin as well as anything you eat. Be sure to check all meds and supplements also. You now know what the rash is and the diet will take care of it.

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