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Could This Be Dh?

carlao

By carlao
in Dermatitis Herpetiformis

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carlao Newbie
carlao
Posted

This is the 4th time I have had this rash. It begins as a burning, tingling sensation on my right thigh and then on the left thigh. Within minutes, I have hundreds of tiny, pin-head size bumps that begin spreading down both legs, usually to both sides of abdomen spreading to meet in the middle. In the past, My thighs look as though they have been burned, it is so red. It has been on both arms and shoulders and on my upper chest; this time it was both wrists. It is always symmetrical. I have never in my life had any rash or bug bite that was this intensely itchy. It is worse in the late afternoon and at night. The bumps eventually crust over, leaving white, dry flaky patches but they have never oozed any liquid.

 

The first time I had it (following a bout of subacute thyroiditis), it lasted 2-3 months. My family doctor tried oral steroids and 3  different antihistamines. The Vistaril helped me sleep, but nothing helped the itch. Then I tried Clobetasol with minimal relief. After doing a lot of research, I eliminated gluten - and the rash begin to clear a week later. My doctor said it was probably coincidence. By the time I finally got in to a dermatologist, there was not much left to see.

 

This go around, I got in to a dermatologist within days. He mentioned Grover's Disease, allergic reaction, and 4 or 5 other possibilites, including DH, although he said DH was low on his list of possibilities, as he said I did not have it in the typical areas. He did a punch biopsy (on a lesion) and sent me home with a prescription for Clobetasol. I tried it for 3 days and gave up. I was still up all night itching. Back to the gluten free diet and 5 days later, the itching lessened and the rash is starting to go away.

 

My family doctor did do a blood test for Celiac disease (don't know exactly what tests) and it was negative. The only local doctor recommended on this site is a gastroenterologist and I really don't have many GI sypmtoms, although I have been diagnosed with IBS many years ago.

 

All of the pictures of DH I have seen show rather large blisters and mine does not look at all like that - but eliminating gluten seems to be the only thing that helps. What do you think?

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squirmingitch Veteran
squirmingitch
Posted

I KNOW your dh biopsy was done incorrectly. PLUS you have to be eating a full gluten diet for at least 2 months before the biopsy. AND if you've had oral steroids or steroid shots or been using topical steroids in the last 2 months before the biopsy then you will get a false negative. I think you have dh. The symmetry of it & the up all night itching of it. DH does not ALWAYS present as blisters. Read the sticky at the top of this forum

https://www.celiac.com/forums/topic/84513-descriptions-of-dh-types/

And read this:

https://www.celiac.com/forums/topic/108804-to-anyone-looking-to-get-a-dx-of-dh-a-skin-biopsy/

 

The derm doesn't know what he's talking about or doing since he didn't do the biopsy correct in the first place. Secondly, if I hear "it is not in the typical areas" one more time I will scream!!!!!! DH can present anywhere on the body. There are no "typical areas" except those that are continuously promulgated by doctors to the point that it seems to have become law. If you say something over & over & over again that does not make it a truth; it only makes it what has been said over & over & over again. You could say a monkey has 7 toes and 2 million people could say that until everyone begins to believe it as truth but that does not make a monkey have 7 toes. You savvy? It's the same as when a doc says you don't have that b/c it's rare. Well someone had it so why are you precluding it b/c it's rare or b/c you think it's rare?

 

60% of celiacs with dh test negative on the celiac blood panel. You also may not have been given a FULL CURRENT CELIAC BLOOD PANEL. Get your records & post them on here please. I'll bet you didn't have ALL 6 of the blood tests done. 

 

So now it is your decision. Go strict gluten-free & never look back or keep eating gluten & find a derm experienced in dh & go get a biopsy done when next you have an outbreak. If you get a dx of dh then it IS a dx of celiac disease & no further tests are needed to confirm.

squirmingitch Veteran
squirmingitch
Posted

You could print this out & take it to the derm who did the biopsy incorrectly & tell him/her that they did it wrong & now you want ti done RIGHT & hand them the paper that explains the CORRECT procedure:

Open Original Shared Link

 

Here are some more links you may want to print out & take:

Open Original Shared Link

 

Open Original Shared Link

 

Open Original Shared Link

 

Open Original Shared Link

 

Even if you decide never to go back to that derm you could send him/her the print out of the first link so you can hopefully educate him/her on how to properly do a dh biopsy so the next poor soul who walks in there needing a dh biopsy can get it done correctly.

carlao Newbie
carlao
Posted
  • Author

Thanks, squirmingitch. I was on a full on gluten diet and no steroids at the time. He was actually doing the biopsy for Grover's disease - usually affects men (I'm not) on the back and chest (where I had no rash), and yet believed DH was a low possibility because of the location!

 

When this bout is gone, I am planning to start gluten again. Now that I have a derm that is at least aware that dh exists, I will insist on the correct biopsy the next time the rash pops up. (And I can actually get an appointment with him without a 2 month wait!) I will also take along copies of the printouts from your links to make sure it is done correctly.

 

I had no idea the appearance of dh varied so much! Thanks for the info.

squirmingitch Veteran
squirmingitch
Posted

You are very welcome! :)

 

My husbands initially presented like the way you are describing yours but we had NO idea at that time that there was even such a thing as dh much less celiac disease. Over the years the presentation of his changed until he got to the point where his were like underneath the skin blisters & they would erupt with the fluid. 

Mine on the other hand, presented as tiny water filled blisters right off the bat. Just goes to show you we are all individuals. Oh btw, the "typical" places such as elbows, buttocks & knees were the last places mine presented but I did have them in the bend of my knees & elbows almost from the start. 

 

I wish you well & let us know what happens.

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