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CherylS

not sure it's DH

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Hello,

I'm in the midst of being tested for Celiac.  I tested negative on the celiac tests that my doctor ran, it wasn't a full panel, it was 3 tests.  I did test positive for the HLA DQ8 gene on the genetic panel.  I am getting an EGD with biopsies and colonoscopy in January.

I have a rash, I wonder if it is DH, but it seems to have a different presentation than what I read about.

I get this terrible itchy rash, it burns when I scratch it, it's terrible, it keeps me awake at night, I sometimes cry because it itches and I can't touch it.  I describe it as someone letting a bunch of fire ants on your skin and wrapping it in saran wrap.  I get this rash on occasion and I have always figured it was the weather, my detergent, soap, fabric softener, etc...  I stopped eating gluten when my celiac labs came back negative and the rash got a little better.  When I went to the GI doctor, she told me to consume gluten daily so that my biopsy results would be accurate which made my rash flare up bad again.  The only thing that helps a tiny bit is eucerin.

My rash isn't always on my limbs.  It normally starts at my navel and moves outward, then to the bottom of my stomach (I thought it was the zipper on my jeans for a while), my breasts (figured it was sweat from running).  It starts on my trunk and moves to my back, and then my fingers or the top of my toes, I sometimes get it on my shins or calves, I currently have it on my breasts, abdomen, back, and calves.  It starts out looking like a yeast infection; little tiny red bumps and my skin is red and angry looking, if I scratch them they open up and a tiny bit of fluid comes out but the air makes it sting so bad.

I'm not sure it's DH because of the location, it seems like everyone else gets it on their arms and legs only.

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Hey Cheryl,

Nope, dh can & does present any old where in the body that it takes a notion to. It can present on the trunk, feet, hands, neck, face, scalp, well, you get the picture. Let me ask you this...... does it present on both sides of the body? Bilateral. 

DH does like to flare where there are pressure points --- you described breasts due to bra, zipper of your pants. Um, yep. I don't wear a bra anymore. Not that I was ever fond of the torture devices in the 1st place and being a child of the 60's didn't endear me to them any but now I'm FREEEEEEEEEE! Pantylines will do it, socks will do it, Pressure points. And hot, sweaty places too. 

 

If the Eucerin helps at all then go forth with it. Nothing helps much with dh. Ice packs but who can walk around with ice packs all the time? 

Thing is with dh, to get a dx of dh you have to be eating gluten just like for the blood tests and you have to get a dh biopsy done. That is taken on a clear place ADJACENT to an active place. It is NOT taken ON the place!!! It can be a real b%$@# to find a derm who doesn't take one look & say it's eczema, or scabies, or bed bugs or psoriasis or blah, blah, blah & here, use this steroid cream & I'll give you a steroid shot & pills or something like that. Then they put you through the wringer going back to them week after week after week or IF they DO take a biopsy they take it WRONG - that would be directly ON a lesion. And if you take oral steroids or get a steroid shot within 2 months of the biopsy then it gives you a false negative. BTW, same goes for the EGD and celiac blood panel. 

60% of celiacs with dh turn up false negative on the blood panel. That could be the reason you turned up negative. It would have been nice if they had done the full panel on you but they didn't. Maybe 1 test would have been positive, then again, maybe not.

A dx of dh IS a dx of celiac disease & no further testing is needed. But since you're already scheduled for an endoscopy then I would say go ahead with that. But PLEASE make sure the doc takes SIX samples!!! With dh, the gut damage tends to be patchier so it's especially important for all six samples to be taken. I'm so glad your GI told you to eat gluten daily until the endoscopy. 

You might find something in this thread to help you deal with the dh a little better.

https://www.celiac.com/forums/topic/96552-help-for-the-itching-stinging-burning-pain-of-dh/


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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Thank you, I was thinking I was crazy.

When it's on my limbs it's bilateral, the worst part is around my belly button and my lower abdomen, that's where it always is.  It's currently on both of my calves (interisting about pressure spots because I just got some knee high boots I've been wearing a lot).  I also get super itchy on my shins, but I don't see a rash there yet.  When it's on the top of my toes there will only be a few little bumps but it is so torturous.

If my biopsy doesn't reveal anything, I wil try to find a derm who will do the biopsy.  Since I'm getting the EGD and scope in January, my deductible will be met for the year and I'll be able to go see whomever I need, I can't wait.

 

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You're very welcome & no, you're not crazy but dh will surely make you think you are! 

I totally get the boots thing. My hubs has dh too & the first place his ever appeared was on both calves after he had been wearing socks -- exactly where the socks had the elastic. We went crazy buying this kind of sock & then that kind of sock & then another kind -- you get the picture -- & could not find any that did not give him the rash. Little did we know it wasn't anything about the socks other than the pressure. We lived way down in south east FL & so he rarely wore socks which saved him a lot of grief. Eventually it began hitting the tops of his feet in a big circle exactly where the apex of the flip flop straps came together. :rolleyes:

Yes, you have a back up plan if the biopsy doesn't come up positive. If they do the biopsy correctly, you should have your positive. But it's always nice to have a back up option. 


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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