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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

The Obligatory "is This Dh?" Post.
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18 posts in this topic

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.jpg

And one with a little more contrast lighting.

photo2.jpg

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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: DH photos

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.

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

Richard

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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.jpg

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

dermatitis-herpetiformis-35.jpg

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

dermatitis-herpetiformis-1.jpg

More Bacne

dermatitis-herpetiformis-55.jpg

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

dermatitis-herpetiformis-80.jpg

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.

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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: DH photos

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....

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: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!

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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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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

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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.

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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!!!

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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.

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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.

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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.

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

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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.

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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.

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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

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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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    • Will my doctor test me? So many symptoms...
      Yep, get tested for celiac.  You have plenty of digestive symptoms to indicate it.
    • Weird Reaction
      Hi Richie, It definitely sounds like you got glutened.  Over here in the USA they can't label foods gluten-free if they are made from gluten ingredients, period.  So your barley drink would not be labeled gluten-free here.  A while back I read something about the testing for gluten in foods not being as accurate for detecting barley hordein as it is for wheat gliaden.  So the gluten-free testing (if they do any) that your drink maker does may not be reliable. Celiac disease is an autoimmune condition.  So the immune system starts reacting when it detects gluten and damages the gut lining.  An immune reaction is not like a food poisoning event, where most of the damage is only while the food is actually in your system and then ends.  An immune reaction can continue for weeks to months.  The immune system is really quite serious about protecting our bodies.  And since it is designed to detect and attack micro-organisms it reacts to tiny amounts of gluten. Wheat, barley, and rye are the main gluten grains that affect celiacs.  But some celiacs also react to oat gluten.  
    • Weird Reaction
      Hi Richie,  Glad you are feeling better. I wondered have you been officially diagnosed with coeliac disease? Just wondering as you say you are anaemic, that is one of the symptoms of coeliac disease, along with other general malnutrition. You don't need to eat meat for iron though, you can get it from non-heme foods, like spinach or parsley. Just be careful with the drink with barley, it may be that you only start to have symptoms if you consume a lot of it, but if you have coeliac disease the damage is still been done to your gut regardless of whether you have symptoms or not, which will ultimately lead to malnutrition as well as other things.
    • Weird Reaction
      I think, if all this is caused by glutening, it could be that it takes a while to work its way out of your system. I should explain about what I said about organic broccoli.   I don't have a problem with organic food,  in fact, I buy organic milk and carrots all the time, but I don't want to try organic broccoli in case it is the broccoli that is the problem, not the insecticide.    I meant to ask, are you a coeliac or is it non-coeliac gluten intolerance that you have?   I wonder what sort of support you get in Australia for these conditions once diagnosed?   Here in the UK I think the understanding is that if new gastro symptoms have lasted for more than six weeks it needs to be investigated.   I have found this very helpful advice because I do get odd twinges of pain and sometimes changes in bowel movements (sorry if tmi) but they rarely last more than a couple of weeks.   If they do persist I mention it to my gastroenteroligist and he follows it up.  I recently had a sigmoidoscopy for left sided pain and they found nothing.  Turns out it was to do with lactose intolerance, but I always imagine the worse!    
    • Will my doctor test me? So many symptoms...
      Welcome, @iwillmoveamountain! Of course you are not wrong to pursue getting testing for celiac. My advice is to drop that doctor and find a new one, preferably one who is celiac savvy, and who will listen to you and test you for the disease.  
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