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The Obligatory "is This Dh?" Post.

saintmaybe

By saintmaybe
in Dermatitis Herpetiformis

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saintmaybe Collaborator
saintmaybe
Posted

Hey guys- I've had what's always been diagnosed as acne

on my back and shoulderrs spreading all the way down to my butt since I was like, 10 years old. It's been unremitting, although it's less bad than it used to be. The skin of the affected area is also constantly red and pretty itchy. I always say the fastest way to my heart is via a good back scratch!

Here's a few pictures for reference. The bumps are red, and can definitely be painful, but they're not superating like acne is, if that makes sense. I'm curious as to whether this IS dermatitis herpetiformis. I'm kind of tired of going to the doctor's office and getting the hairy eyeball, like I have poor hygiene.

photo.webp

And one with a little more contrast lighting.

photo2.webp

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Hopeful1950 Explorer
Hopeful1950
Posted

It's hard to tell because DH can present very differently on different people and depending where on the body it is.

I can only tell you how mine behaves...I feel a sensation of kind of prickly and itchy, then small itchy red bumps appear. If I have managed not to scratch them they will have little fluid filled blisters on them. Most of the time I can't see the blisters with the naked eye. I need a magnifying glass. When you get a new patch do you have someone who could take a look with magnification? The blisters are very fragile and break easily, even from clothing rubbing, so it might take a few tries.

Here is a link to some of the best pix of DH I have ever seen: Open Original Shared Link

The "hairy eyeball"...I cracked up :lol: . I've been getting that for 8 years. It's hard to get a correct diagnosis if you have DH, and I'm beginning to think it is not only DH, it is any "non-specific" rash.

lovegrov Collaborator
lovegrov
Posted

Doesn't look anything like my DH did and it's not in a common spot for DH.

Richard

saintmaybe Collaborator
saintmaybe
Posted
  • Author

Doesn't look anything like my DH did and it's not in a common spot for DH.

Richard

Really? Because from the above posters link, it looks like there are at least three different general clinical presentations of Dh- blistering, more of an acne type, and some really localized dark red spots over a large surface area. It also looks like it can vary from severe (holy schneickes, was I bit by a BROWN RECLUSE!?) to irritating annoying itchy red bumps. It also looks like it can appear anywhere on the body, including upper back and shoulders- there are at least three pictures of women who have very similar Dh in the exact same place I do. The pictures actually look almost identical.

Common areas appear to be the buttocks (ouch, I have to say), the groin, the upper back and shoulders and the stomach.

Dark red, large surface area:

dermatitis-herpetiformis-3.webp

I've been bit by a spider! (Not really, but it looks just as painful)

dermatitis-herpetiformis-35.webp

Chronic Bacne Presentation (Looks pretty darn similar to mine).

dermatitis-herpetiformis-1.webp

More Bacne

dermatitis-herpetiformis-55.webp

Symmetrical presentation of blistering, red type (what I'd consider probably the most common presentation based on the pictures)

dermatitis-herpetiformis-80.webp

Point being, if my rash doesn't look like yours and isn't in the same place as yours...that proves what exactly?

Anecdotal evidence only gets us so far with Dh, generally speaking, because look, five different presentations on five different people! No wonder the doctors are confused.

saintmaybe Collaborator
saintmaybe
Posted
  • Author

It's hard to tell because DH can present very differently on different people and depending where on the body it is.

I can only tell you how mine behaves...I feel a sensation of kind of prickly and itchy, then small itchy red bumps appear. If I have managed not to scratch them they will have little fluid filled blisters on them. Most of the time I can't see the blisters with the naked eye. I need a magnifying glass. When you get a new patch do you have someone who could take a look with magnification? The blisters are very fragile and break easily, even from clothing rubbing, so it might take a few tries.

Here is a link to some of the best pix of DH I have ever seen: Open Original Shared Link

The "hairy eyeball"...I cracked up :lol: . I've been getting that for 8 years. It's hard to get a correct diagnosis if you have DH, and I'm beginning to think it is not only DH, it is any "non-specific" rash.

You have to laugh, and have a sense of humor about this- otherwise you're just gonna cry. Our bodies get beat up over years of celiac abuse!

Thanks for the link! I'd seen a few of those pictures before, but never so many in one place. Enormously helpful. It must be difficult to diagnose Dh because I presume doctors are taught that rash X looks like Y, not rash A can look like B, C, OR D, except when it rains,and then it might look like I, and don't forget to ask about the patients age, because then it can be P or Q....

squirmingitch Veteran
squirmingitch
Posted

:lol: Saintmaybe; humor will make a survivor out of you. I know it's my #1 life survival tool.

Honestly, I get ones on my back that look like that & on that portion of my back too. I also get ones in many other places which present themselves quite differently. I think my body has seen any/all forms of dh on any given portion of my body at one time or another through this process. The one I'm most concerned with is.... GETTING THEM ALL TO GO AWAY!!! PERMANENTLY!

cahill Collaborator
cahill
Posted

Your pictures looks very similar to my diagnosed DH and is in the same areas as mine.

When I was 17 I did have it on my arms ( the week before my wedding :blink: )

Now (at 54) and for the past few years it is mainly on my shoulders ,back and bottom.

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lovegrov Collaborator
lovegrov
Posted

Uhh, saintmaybe, you seemed to have been asking us if in our experience this looked like DH. I make no pretense that I can diagnose you in a photo, but like it or not, this looks absolutely nothing AT ALL like the DH I had for 20 years. Not even close. Mine looked like the guy showing us his elbow, although not quite that severe.

richard

saintmaybe Collaborator
saintmaybe
Posted
  • Author

Lovegrov- rich, not trying to be rude, just asking an honest question. Because while it's not similar to yours, others have chimed in and said it DOES look like theirs. It's confusing! I think I've answered my own question, in that dh can probably only be definitively diagnosed via biopsy.

Di2011 Enthusiast
Di2011
Posted

I'm not diagnosed but gluten free works for me. I have to be extremely careful with gluten and salts/iodine. Eggs (yolk) are on my don't eat list now. I'm not game enough to even try seafood - my absolute favourite food. That will have to wait.

My DH went wild on my last day working at a bakery. I have it from head to ankle. :ph34r:

It looks like every DH picture I've seen, including the ones you have posted here(except one). And I've seen a LOT of skin pictures. I've been really careful to discriminate - legitimate medical (ie diagnosed) - and seen way too many pictures of other skin problems I'm glad I don't have. :P

The only pictures that don't resemble my DH are the ones like the one you tagged with "I've been bit by a spider! (Not really, but it looks just as painful)" It is way way way too painful and itchy to let it get so fluid filled. I describe it like toxin/acid/poison trying to get out of my skin and I have to help it out.

The different areas of my body appear slightly differently.

My hands/wrists are the most likely place to have the typical linear herpes looking ones. The few I get on my palms seem to be least itchiest. I know when I've been glutened because I get little bubbly ones on my fingers within the hour. These rarely appear when I've overdone the iodine.

The big (up to about a 75mm) and really nasty burning itch ones appear on my upper arm, upper thigh and buttocks. These are the ones that have (((thankfully!!!!!!!!)) had a very good reaction to gluten free.

My torso (belly, breast) tends to be much smaller bumps which are sometimes a bit like having blackheads.

My back is just like yours.

I can't wait to shave my underarms and legs :lol: Healing so shouldn't be too long now!!!

saintmaybe Collaborator
saintmaybe
Posted
  • Author

Well guys, I can't stand the suspense. I also live less than an hour from Beth Israel, which has a major celiac research center and an appointed dermatologist (a Harvard professor no less) who can evaluate my Dh. I'm damned lucky to be able to take advantage of resources that other cellars can't, either financially or geographically. Making my appointment in the A.M.

pricklypear1971 Community Regular
pricklypear1971
Posted

Well guys, I can't stand the suspense. I also live less than an hour from Beth Israel, which has a major celiac research center and an appointed dermatologist (a Harvard professor no less) who can evaluate my Dh. I'm damned lucky to be able to take advantage of resources that other cellars can't, either financially or geographically. Making my appointment in the A.M.

Have fun.

Yeah...if it acts like DH it probably is. That's the only consistency I've found in the zillions of posts compared to the scanty and repetitive info I've found.

squirmingitch Veteran
squirmingitch
Posted

Well guys, I can't stand the suspense. I also live less than an hour from Beth Israel, which has a major celiac research center and an appointed dermatologist (a Harvard professor no less) who can evaluate my Dh. I'm damned lucky to be able to take advantage of resources that other cellars can't, either financially or geographically. Making my appointment in the A.M.

Good for you. Go, get it done with & then you can stop wondering & get on with whatever it is you need to do.

Let us know what turns up.

Di2011 Enthusiast
Di2011
Posted

Be sure to let us know how you go with the Professor!!!

saintmaybe Collaborator
saintmaybe
Posted
  • Author

Hey guys- Made an appointment this morning with the professor. She's booked out until February unfortunately, but I guess if you want the best, you have to wait for the best. I figure this gives me time to finish my genetic testing, really update my food journal, and take some more time lapse pictures that might help make a diagnosis.

saintmaybe Collaborator
saintmaybe
Posted
  • Author

UPDATE PART 2: I found a chiropractor that specializes in celiac disease that's not five miles away from my house and where I work. I am spoiled for riches lately. I'm making an appointment tomorrow to get this damn back realigned and get this sciatic pain evaluated, because, this hurts like a you know what. They also say specifically that they specialize in holistic and wellness evaluation. I'm sick to death of traditional doctors and pills. Give me a chiro or an acupuncturist any day. Cause you know what? They've always been the most helpful, even pre-diagnosis.

lovegrov Collaborator
lovegrov
Posted

Good idea. Apparently mine was incredibly obvious because my dermatologist, who is no celiac expert, took one look and knew what it was. I never even had a skin biopsy. Unfortunately, he didn't know at the time about the celiac connection to DH.

richard

  • 3 weeks later...
tlcounts Newbie
tlcounts
Posted

Wanted to say that my spots look EXACTLY like yours! Thank you! I've so far tested negative to the celiac blood panel test and a dermatologist did biopsy a blistery spot which came back negative but from what I've been reading here he did it wrong. He only took a slice off a spot, no punch and no unaffected skin.

Please do keep us posted as to what your doctors says. I'm off to find a new dermatologist.

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