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mommy2littlegirls

Is It Dermatitis Herpetiformis?

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A little back story:

About 3 months ago I came down with a insane itchy-ness. I couldn't get rid of it. It was horrible. I went to bed in tears, and woke up with tears because it was so miserable. A rash would show up a day or two after a certain part of my body would itch. It progressively got worse too. I was itchiest on my neck, back, chest and upper arms. I also got some on my shin area. None on my hands feet or face. I went to my doctor and she was pretty clueless. She thought perhaps it was scabies but wanted to try zyrtec first to see if that would help. It had absolutely no effect on me. I went back one week later and they prescribed me steriods as well as a scabies treatment. I did both. Neither helped at all. I started to go to the dermatologist and she scraped my skin and looked at it under the microscope in the office and came to the conclusion it wasn't scabies or anything like that. She did two skin biopsies. One of a lesion and one next to a lesion. She had them test it for dermatitis herpetiformis and sent me home with a script for Dapsone. She told me that the Dapsone may or may not work. She said if it did, it would most likely mean I had DH. I went home, applied the lotion. I thought I was losing my mind.....the very first night it started working! My itching was nearly gone within 24 hrs. and my rash was going away as well. By the time I met up to have my stitches removed and the results of the biopsy, my rash was nearly gone and I was no longer itching. HOWEVER, the biopsy results came back negative!!! I was sort of heart broken!

Fast forward a week:

I went to an allergist and she did the test on my back and scraped me about 50 times for all food allergies. Those all came back negative as well.

Since then, I thought I would try to figure this out on my own. I felt like I was going in circles with the doctors office. I started Gluten Free. I went 2 weeks and had no rash or no itching without the use of Dapsone. SOOO i started Gluten again. I'm on day 3 and the itching is already starting back up, as well as a little bit of rashing already.

A couple other tidbits. I've been casually diagnosed with IBS. Last summer I was in for 4 months straight of diarrhea. The did the Celiacs blood test that also came back negative. The diarrhea eventually ceased. About 4 months later I was in for sever constipation. I took laxative, stool softeners, drank juices and waters and nothing was working. I would say about 75% of the time, I either have diarrhea or constipation. I'm very rarely regular.

Does this sound like DH to anyone? I'm at a loss as to what it could be. The allergist did say this: Modern medicine has come a long way but there are still many things that are a mystery. She said that in her opinion, since the Dapsone worked to well, she would think it would be an autoimmune issue, and not an allergy.

Anyone else with DH not get a diagnosis off of a skin biopsy?!

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There is a fairly high rate of false negatives in all the celiac testing. It sounds like the Dapsone worked for you but it is a very toxic med. If you have had all the celiac testing you are choosing to do it would be a good idea to give the diet a good strict try for a couple of months and see if it helps with both the skin and GI issues you have.

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There is a fairly high rate of false negatives in all the celiac testing. It sounds like the Dapsone worked for you but it is a very toxic med. If you have had all the celiac testing you are choosing to do it would be a good idea to give the diet a good strict try for a couple of months and see if it helps with both the skin and GI issues you have.

The Dapsone I was given is actually the cream/ointment. They label it under Aczone. It worked amazingly!

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The Dapsone I was given is actually the cream/ointment. They label it under Aczone. It worked amazingly!

Glad it worked well for you but the diet will clear up the other issues and negate the need for the med. Do delete iodine at first also as it will keep the skin antibodies active.

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