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Special Staining To Diagnose Dermatitis Herpetiformis

sharonlee

By sharonlee
in Dermatitis Herpetiformis

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sharonlee Newbie
sharonlee
Posted

Hello,

n 2004, my physician did a gluten panel to test for celiac disease. Apparently, it came back negative. However, due to obvious symptoms and reactions when I eat gluten - I opted to place myself on a gluten free and dairy free diet.

Since 2004, on six different occasions, I have experienced a rash. This past week, I again experienced the rash. The rash is not in the typical location for dermatitis herpetiformis, however, I have read that it can be anywhere. It has been consistently in the same places these six times - located on my trunk, neck, scalp, back and behind knees. It is very itchy, papular and then as it improves - gets sort of a hard scale or feel to it before fading. Usually lasts at least one week.

I decided to go to my physician and request a biopsy to determine if it is dermatitis herpetiformis. However, my physician did not order immunoflourescent staining. He called me with the results and said that the biopsy showed nummular contact dermatitis or allergic dermatitis. I questioned him as to whether the special staining had been done. His reply was, no, that "after initial assessment, they (the lab) determined that staining wasn't necessary".

Do you think that is an accurate response? I thought that DH could only be diagnosed with the staining. Is is true that they could look at the sample and make an assessment that staining wasn't necessary because it was obvious another problem?

My only intent on requesting the biopsy was to determine if it was DH with the special staining. I had no interest in knowing what the cause of the rash was - only if it was DH.

My reasoning is that if it is celiac - then I want to know. I am already gluten free but knowing it may help me to be more proactive in my care. I know that lymphoma risks etc are associated with celiac.

I do have vitamin D deficiency and was told this year that I have osteopenia. I have much gastrointestinal trouble when I consume gluten and also pitting of the enamel on my teeth. I used to itch all the time on the sides of my hips or buttocks - but since going gluten free dairy free - I no longer have that problem.

I do know that I had recently consumed a small amount of gluten - at a wedding party. I also had been using a lot of iodized salt on fresh cucumbers of late.

What do you think?

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ravenwoodglass Mentor
ravenwoodglass
Posted

I wonder if your doctor forgot to note on the biopsy that you were specifically looking for DH?

sharonlee Newbie
sharonlee
Posted
  • Author

I wonder if your doctor forgot to note on the biopsy that you were specifically looking for DH?

Maybe - but that is the whole reason that I went in for the biopsy anyway. It just frustrates me.

climbmtwhitney Apprentice
climbmtwhitney
Posted

Maybe - but that is the whole reason that I went in for the biopsy anyway. It just frustrates me.

Sharon,

The same thing happened to my 7 yr old son. The dermatologist said he'd take a 2nd biopsy with the stain if the 1st visual peek looked like DH was a possibility. Well, the first peek came back as "eczema". Someone here on the forum said that DH is a form of eczema, so it is supposed to visually resemble it. This happened last summer. We are still experiencing the awful rash on the back of his neck and elbows. It happens every few months. The last outbreak was in the beginning of September and is still healing. My son has been gluten-free for 2 years. We still think the rash is happening when he accidentally gets gluten. We did the full panel of skin prick testing and nothing else turned up. The 1st biopsy was hard for him so I'm reluctant to follow up (with a new doctor of course) with another one.

I would insist on a 2nd biopsy w/staining. From what I learned here the skin sample needs to be about 2 mm away from an actual lesion/bump. And, you are right, the only way to know for sure is to do the stain. Good luck with it!

Jillian

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