What Do I Have?

[bananababy]

I believe I have DH. After seeing several dermatologists, I am always told that the tests are negative and no-one knows what I have. I have read a lot of the forums and my symptoms seem to be different. I'm hoping the description of what happens to me sounds familiar to other forum members and hopefully I can have a more definitive self-diagnosis. My outbreaks occur on my hands, fingers, feet, ankles, legs, arms and, sometimes, my buttocks. I will suddenly get very itchy in one spot and the itch is intense. There is no rash but sometimes there are little bumps on the surface. I must scratch - there's no way I cannot. When I scratch the area, the skin starts to peel but only the top layer of the skin comes off (similar to peeling after a sunburn). Once the top layer of skin has been opened, the itch goes away. It doesn't bleed but the area waters and the next day I have a very red and sore patch where I scratched. Does this sound familiar to anyone?

Thank you in advance for your reading of my post and, hopefully, a response.

bananababy

[Hopeful1950]

I have DH and have experienced something similar. First: the itching. Almost feels like it is coming from the inside. Second: the little bumps. If it is a large patch of skin that is itching it can almost feel like an orange peel. At this stage, if I catch it before I have scratched too much, I can look with a magnifying glass and see little water blisters that are not always visible to the naked eye. At this stage they itch so much I have to scratch. Third:Skin peels off in a sheet and the lesion is sticky and oozy for a day or two. During this stage it burns. Fourth: Crusts over and eventually heals. In my case the lesion rarely heals right away. It will hang around for weeks or months because new itchy blisters form around the edges. I have had lesions on ankles, elbows, from knee to ankle on shins, buttocks, back of the neck, upper back, forearms from elbow to wrist on the outside. I have had a few isolated ones on my knuckles and hands, my face, on one toe.

Now that I have been gluten-free/iodine-free for a year, when I blister, they are isolated singles and they don't itch nearly as much and don't last nearly as long.

What kind of testing have they done? Bloodwork (celiac panel)? Skin biopsy (from the skin next to an active lesion)? Sometimes if they are not specifically looking for DH, they won't order the correct tests.

[bananababy]

I have had numerous blood tests and a biopsy but I'm not sure it was taken from the right spot. I've also had a colonoscopy and an endoscomy. I've never had a celiac panel - what kind of doctor do you go to to get that test? You are the first person to ever give me a definite answer - thank you!

I have DH and have experienced something similar. First: the itching. Almost feels like it is coming from the inside. Second: the little bumps. If it is a large patch of skin that is itching it can almost feel like an orange peel. At this stage, if I catch it before I have scratched too much, I can look with a magnifying glass and see little water blisters that are not always visible to the naked eye. At this stage they itch so much I have to scratch. Third:Skin peels off in a sheet and the lesion is sticky and oozy for a day or two. During this stage it burns. Fourth: Crusts over and eventually heals. In my case the lesion rarely heals right away. It will hang around for weeks or months because new itchy blisters form around the edges. I have had lesions on ankles, elbows, from knee to ankle on shins, buttocks, back of the neck, upper back, forearms from elbow to wrist on the outside. I have had a few isolated ones on my knuckles and hands, my face, on one toe.

Now that I have been gluten-free/iodine-free for a year, when I blister, they are isolated singles and they don't itch nearly as much and don't last nearly as long.

What kind of testing have they done? Bloodwork (celiac panel)? Skin biopsy (from the skin next to an active lesion)? Sometimes if they are not specifically looking for DH, they won't order the correct tests.

[Hopeful1950]

I gave up on dermatologists after going to three of them who just told me "don't scratch" and "apply this cream". One of them biopsied right in the middle of a lesion (wrong!). I knew that it was something I was eating, so I went to an allergist. He ordered the celiac panel (blood test) and did extensive allergy testing. He suspected celiac due to the appearance of the rash. All of the allergy tests came back negative. By process of elimination he still felt it was celiac. The blood test then came back negative. Further research indicated that a negative blood test is possible with DH in a certain percentage of patients. There was no way I was going back to a dermatologist so I ordered a test from EnteroLab on-line. They tested for the gluten sensitivity and also did a gene test. The EnteroLab test indicated I was having active dietary gluten sensitivity and also had two genes predisposing me to gluten sensitivity/celiac. My allergist felt that the test results from EnteroLab were conclusive enough so I immediately went gluten-free.

In answer to your question, I think any doctor can order the blood test, but a dermatologist would need to do the skin biopsy unless you stumble across a family doc who knows how to do it correctly.

I had to pay for the EnteroLab test myself because my insurance wouldn't cover it, but it was worth it.

My advice to you would be to get copies of your test results and find out if they were looking for celiac. Find out if the dermatologist biopsied correctly. If you feel that you have exhausted all avenues with the docs you can always go strictly gluten/iodine-free and see if it helps you. If you research these forums you will find all kinds of information about how to do it. There are also many resources available both on the web and in books.