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Could This Be Dh?

sflick

By sflick
in Dermatitis Herpetiformis

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sflick Newbie
sflick
Posted

I have had a rash now for over a month. Was initially just on my chest, then in the same place on the outside of each calf. Was treated with antifungal cream, then with Elemite and oral steroids. Rash was a tiny bit better until I went off steroids, then spread to upper legs, arms, upper buttocks/low back and upper back. It is symmetrical, intensely itchy. Went to dermatologist and he immediately suggested DH. Sent a biopsy to Mayo. It came back negative. When I tried to question whether it was a biopsy of the lesion or healthy skin next to the lesion, he cut me off and said he did the biopsy right. Now he says it is scabies and is treating me with steroid cream and Elemite again!! It does not look like any pictures of scabies I have seen and does not have the typical distribution of scabies. It has now spread to my abdomen. I wish I could attach a couple of pictures. Getting very frustrated as the itching is driving me batty. I have been on antihistamines for over two weeks now and using steroid creams, caladryl, etc. It doesn't ever go away.

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ravenwoodglass Mentor
ravenwoodglass
Posted

Are you gluten free? If your not do you have other symptoms of celiac, tummy issues, migraines, fatigue, anemia, joint and muscle pain, GERD, mood issues etc for example? If you do has your doctor done a celiac panel?

If your not gluten free and your doctor hasn't tested you for celiac ask for the panel before you go gluten free. After you have had all testing for celiac done, including the endo and biopsy if you choose to have one, try the diet and see if it helps.

One test for DH that you can do at home is to put iodine on a small area on your arm and cover it with a bandaid. Leave it in place for a couple days and then look for the rash or irritation when you remove the bandaid.

sflick Newbie
sflick
Posted
  • Author

Are you gluten free? If your not do you have other symptoms of celiac, tummy issues, migraines, fatigue, anemia, joint and muscle pain, GERD, mood issues etc for example? If you do has your doctor done a celiac panel?

If your not gluten free and your doctor hasn't tested you for celiac ask for the panel before you go gluten free. After you have had all testing for celiac done, including the endo and biopsy if you choose to have one, try the diet and see if it helps.

One test for DH that you can do at home is to put iodine on a small area on your arm and cover it with a bandaid. Leave it in place for a couple days and then look for the rash or irritation when you remove the bandaid.

I went gluten free the day after the dermatologist told me he thought that was what I had. I did call my regular doctor and had her order the celiac panel that day. It was negative I believe. I don't really have the tummy issues, but I do have migraines occasionally. I did take ibuprofen last weekend and the rash did get worse. I have added gluten back in my diet less than 48 hours ago and I think the rash might be getting a little worse again. Had accupuncture to try to help with the itching. I don't want to take Dapsone as I am still nursing a baby.

Kay DH Apprentice
Kay DH
Posted

I recommend getting the Celiac Panel blood test, and make sure they test for the IgA and IgG antibodies because some people can have celiac but test negative because they are IgA deficient. I've had the symmetrical rashes for a few decades, mostly on the insides of my calves and back. It was never tested by doctors, so no diagnosis and no treatment beyond hydrocortisone. I went gluten-free last fall after getting the flu and start of GI problems, stiff joints, muscle aches, brain fog, etc. These all went away after going gluten-free; the rash took about 6 months. After getting glutened now I sometimes get a "ghost" of the rash that goes away in a few days. The skin biopsy can be influenced by what is sampled (lesion versus area around) and by how many areas were sampled. Did he take multiple biopsies or only one?

sflick Newbie
sflick
Posted
  • Author

He took two biopsies. One he sent to a local lab that showed "an allergic reaction". The other was sent to the Mayo Clinic and tested negative. Not sure if he sent the actual lesion or skin next to the lesion. I have several pics of my rash, but not sure how to attach them. I have added gluten back into my diet and am doing the iodine test now.

sflick Newbie
sflick
Posted
  • Author

I did the iodine test & after 24 hours, I have a distinct red rectangle on my arm. Does this definitely mean I have DH? Also my rash is definitely getting worse again after adding gluten back in my diet.

ravenwoodglass Mentor
ravenwoodglass
Posted

I did the iodine test & after 24 hours, I have a distinct red rectangle on my arm. Does this definitely mean I have DH? Also my rash is definitely getting worse again after adding gluten back in my diet.

I think it quite likely especially since the rash has gotten worse when you added gluten back in.

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  • 4 weeks later...
BoydBT Apprentice
BoydBT
Posted

I have had a rash now for over a month. Was initially just on my chest, then in the same place on the outside of each calf. Was treated with antifungal cream, then with Elemite and oral steroids. Rash was a tiny bit better until I went off steroids, then spread to upper legs, arms, upper buttocks/low back and upper back.

Mycosis Fungoides is a very rare skin cancer. I was dx about 18 months ago and I am doing well with a special cream my Dr scripted for me. I just got my celiac disease dx. Since there is a link with celiac disease and cancer I wonder if that is why I got it.

Make sure you get this ruled out!~!!! Sounds very close to just where I got bloches and leasions.

T cell lymphoma of the skin

T cell lymphoma of the skin is the most common type of primary cutaneous lymphoma or skin lymphoma. It is also sometimes called mycosis fungoides. It is a type of cancer that starts mostly or entirely in the skin. It occurs when the white blood cells that protect us from infections (called lymphocytes) start to grow uncontrollably within the skin. In the beginning it often looks similar to psoriasis or eczema, and then it gradually becomes thicker. The cause is not known. The condition has a variety of treatments, and can usually be controlled.

It effects the chest, back, lower stomach, upper legs and groin area. The local dermatologist had never seen it before. The biopsy was a surprise to all of us.

I went to Fox Chase Cancer center in Philly and saw a speciality who only treats skin cancers. After applying a series of creams it goes dormant. But does recur or flare up which requires to start up the skin cream.

Again none of the Dr. thought of a celiac disease blood test.

Boyd

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