Could This Be Dermatitis Herpetiformis

[hadabaday2day]

Okay so I am not too keen on how to post pics in a forum like this, but if it doesn't work then I will post links to the pics.

I have Celiac Disease and was told 4 years ago that I did not have it even though I had a positive biopsy for DH and a positive blood test. Not sure how you miss something like that, but that's besides the point. I didn't know much about it back then and had no idea what DH was. Only last month did I happen upon some info that told me that if you have DH you do indeed have Celiac. So now we have just gone gluten free in the house.

My son has had eczema pretty much since he was born. He vomited a lot and was switched from breastmilk to a hypoallergenic formula. Now I suspect that he too may have Celiac disease. He did have a negative blood test, but I am certainly not convinced. He is going gluten free too.

He has always had crazy problems with his eczema. It's not just typical dry patches. He gets all these little bumps that itch and the doctors always just tell me it's "an atypical reaction to his eczema". That I am not buying either. One time, about a year ago, he broke out in what I thought was hives. The dr said it was not hives, but another atypical reaction.

When I should have been Dx I had a terrible DH rash on both elbows down my arms and both knees. I have never had a rash since, but have very dry skin. I am not too familiar with what DH looks like other than what I remember of my rash 4 years ago. I'm sure there are lots of different variations on it. Now that I know that's what I have, I am wondering if that may be what my son has. He almost always has the little bumps and they are mostly on his thighs with some on his lower legs, trunk and arms. If he is naked, he will scratch them. Then they break open. The pics below are of his eczema when he was a baby on his face and his "hives". I have circled a spot in one pic and that is what his bumps that he has all the time look like. Does this look familiar to anyone?

I am also confused as to whether you can get a DH rash from skin contact with gluten or just ingestion. If it is skin contact then I feel bad that I have been slathering him with Aveeno with oatmeal for the past year. Poor baby!

http://i71.photobucket.com/albums/i135/had...0misc/rash2.webp

http://i71.photobucket.com/albums/i135/had.../Photo-0133.webp

http://i71.photobucket.com/albums/i135/had.../Photo-0135.webp

http://i71.photobucket.com/albums/i135/had.../Photo-0134.webp

[land-turtle]

I don't know why you haven't gotten a response before now, but I would like to make a small comment. Let me preface by saying that I am on this forum because mainly I am a celiac but don't have DH but psoriasis, just trying to find something to help that, my son though has skin issues like exzema but they are very strange and he has had skin issues all his life so this got my attention. When he was a baby he had that same rash although in baby books it was listed as a reaction to harsh soaps and just dry skin. Are we all sure of this? I don't know but I don't have any pictures of him to remember exactly what it looked like. I was diagnosed late late late and then my son went gluten free one year later at age 12 even though his blood work was technically negative. I put him on the diet because the numbers were not in my mind 100 percent negative. Well to make a long story short the transformation was almost a miracle. I did not know what my son could be. He was no longer irritable, he was becoming smarter, he had always had a speech impediment and that went away( took a while) and he got so much more energy. And he did not have vomiting spells which were so infrequent the pediatrician said he must be getting viruses. The rash on the older child looks to me like hives from a food allergy which as you know we are more prone to get. But I wanted to comment on the extended abdomen which is classic celiac symptoms in a child. His stomach should not protrude like that. I will sadly report that my son's excema hasn't cleared completely but he eats things that I don't, like Cheetos and other chips with MSG and things I wish he would not eat, not gluten because strangely when he went gluten free his reaction now to gluten is diarhea. Hope this helps and LOL not a short comment.

[hadabaday2day]

I don't know why you haven't gotten a response before now, but I would like to make a small comment. Let me preface by saying that I am on this forum because mainly I am a celiac but don't have DH but psoriasis, just trying to find something to help that, my son though has skin issues like exzema but they are very strange and he has had skin issues all his life so this got my attention. When he was a baby he had that same rash although in baby books it was listed as a reaction to harsh soaps and just dry skin. Are we all sure of this? I don't know but I don't have any pictures of him to remember exactly what it looked like. I was diagnosed late late late and then my son went gluten free one year later at age 12 even though his blood work was technically negative. I put him on the diet because the numbers were not in my mind 100 percent negative. Well to make a long story short the transformation was almost a miracle. I did not know what my son could be. He was no longer irritable, he was becoming smarter, he had always had a speech impediment and that went away( took a while) and he got so much more energy. And he did not have vomiting spells which were so infrequent the pediatrician said he must be getting viruses. The rash on the older child looks to me like hives from a food allergy which as you know we are more prone to get. But I wanted to comment on the extended abdomen which is classic celiac symptoms in a child. His stomach should not protrude like that. I will sadly report that my son's excema hasn't cleared completely but he eats things that I don't, like Cheetos and other chips with MSG and things I wish he would not eat, not gluten because strangely when he went gluten free his reaction now to gluten is diarhea. Hope this helps and LOL not a short comment.

Thanks for your reply. I did notice after I posted the pictures that his stomach was very distended. I guess I really didn't notice it back then and it wasn't always like that, but certainly that is not a good thing. He had so many issues back then that I'm not surprised I didn't catch that. We are almost 3 weeks gluten free and he still has the eczema, although not as bad. He is however having diarrhea almost every day. Not all day, just one or two, but it burns his skin. I hope he isn't allergic to anything else. I was thinking and the only thing he eats that I don't is Trix and Cocoa Pebbles. They don't have gluten ingredients, but they are processed on equipment..blah blah. I only bpught them because he wouldn't eat the gluten-free cereals like Envirokidz. I'm going to stop feeeding him those and see what happens. I don't know if I could handle another allergy.

Sorry I got a little off topic there. Thanks for the reply!

[lovegrov]

The distended belly is definitely a possible sign of celiac. The rash does not look like my DH, which was basically clear blisters that itched a lot. The rashes can be tested for DH, however.

good luck

richard

[Janeti]

OH. I wish that I would have seen your post when it first came out. My son had the same rashes from the day he started drinking formula...And at 5 days old, he stopped breathing, due to a reaction from the formula. I can't tell you throughout his childhood how many times I had to rush him to the pediatrician because of high fevers and rashes. (by the way, the dr would say it was just a virus passing through body) He had those rashes up unitl 2 years ago when we had him tested, he is now 24. The rashes are now faded, but if you look close, you can see some outlines of it. He still has the distended belly...which he now nick-named it the *grande* lol My son was always sick, with projectile vomiting, and I could go on and on. Maybe you can get him gene tested...at least its a place to start. I'm not sure that I understand why the blood tests are not always accurate.

[Mother of Jibril]

My son had the same rashes from the day he started drinking formula...And at 5 days old, he stopped breathing, due to a reaction from the formula. My son was always sick, with projectile vomiting, and I could go on and on.

Projectile vomiting in a baby can also be caused by casein (cow's milk protein) intolerance. My son gets eczema on his face from the slightest bit of casein or corn. I refuse to try gluten.

However... if your son had an anaphylactic reaction to formula, that's a true (IgE) allergy, not just an intolerance (although it's possible to have an allergy and intolerance to the same food). Has he ever been tested by an allergist? Adults can get rid of their protruding belly with the right diet.

[Janeti]

As a mother of a 24 year that has been sick since the day he was born, I can say that my son has had every test that there is...and allergy testing x4. Same thing every time, no allergies. It has been a long journey, and we are now on the right path with his health. (by the way, my son was on a strictly soy formula...) After 22 years of sickness, he is at 99%...he has come a long way. He is happy and healthy(and very silly at times ) He will have to work on that belly, but that is the least of it.

[Melg]

Hi Hadabadday2day,

I realize this is an old thread but on the off chance you see this I could really use your help. The pictures of your son's rash looks exactly like what I have now. I know I have issues with gluten but I don't know if it's celiac or just an allergy. The doctors I've seen haven't been very helpful so I'm trying to figure out on my own if I have regular old hives or DH. None of the images of DH I've seen look like this though, so I'm just wondering if you ever found out if it was DH or not. Thank you!

Melissa