What Is This?

[Dixiebell]

My son started with this itchy, burning 'rash' on his knee on Friday 1-21-11. The pics of his knee are from Fri. 1-21-11 to Mon. 1-31-11. The rash on his chest was on Sat. 1-22-11, this went away by bed time.

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He has been doing fairly well other than he has had fat in his stool. No rashes to speak of other than an occasional spot here and there and they seem to clear up pretty quick.

I wonder if he may have had a cupcake at school. He told me that they had them and he did not have any. He said they looked gross and he would not have wanted one anyway. I still wonder though. He also had some extra loose stood this past Fri.

[ravenwoodglass]

It does look like it could be DH. Did they bake those cupcakes in the classroom?

[Dixiebell]

No. They were brought in for another childs b-day.

[WesternMA12]

That is exactly the rash I have covering my fore arms, in between my elbows, and between a few fingers. I am not diagnosed with celiac (panel came back normal), I am awaiting a dermatologist appointment but I believe it to be DH. Hope you get answers!!!!

[eatmeat4good]

That is exactly what my DH looked like.

Before it got really bad and became open weepy sores that never healed.

My vote is DH.

As for the cupcake question.

I would hesitate to believe he actually ate one since DH gluten reactions can be very sensitive to gluten, it may not have been necessary that he ingested an entire cupcake. But he likely got some gluten somewhere.

[Dixiebell]

Thank you!

eatmeat4good, did you have a skin biopsy? I am wondering because I am afraid to take him back to the derm. The first time the Dr. would not do the biopsy and testing I wanted and the numbing shot hurt my son so bad he cried. This is when we found out he has KP. He has never cried getting shots or blood drawn. When we go back I will for sure ask for a different Dr. to do it.

[eatmeat4good]

No I was never able to get a biopsy.

I saw two Chiefs of Dermatology at two Medical Universities in two different states trying to get a biopsy. Although I was very determined to get a biopsy, both refused to do a biopsy. One said it was adult acne and the other said it was neurotic excoriation.

I had several Dr.'s suggest I get a biopsy but I couldn't figure out how to communicate well enough to get it done. They say advocate for yourself. I tried. But you really are at the mercy of the medical person treating you. If they don't wanna test you they don't have to. It is sad, because had I gotten the biopsy the first time I wanted it, it would have saved me years of illness, scarring, and secondary autoimmune disease.

However, when I was asking for a biopsy, I didn't know what I was looking for. I just wanted to know what this horrible severe burning itch rash was. It is likely that it wouldn't have showed anything unless they biopsied the skin next to the lesions since that is where the antibodies are. If they biopsied at all they would have taken the lesion. One Dr. told me there is nothing to biopsy, you scratched everything open and we need an unbroken lesion. As DH sufferers know, the blisters are fragile and often break open as soon as they form.

I wanted to thank you for posting pictures of your son's rash. It is the only picture I have seen that exactly resembles the rash I had on my legs for years. It went away but the next round of lesions was on my face and much worse than the rash on my legs.

I completely understand being afraid to go to the dermatologist. However, you are much better informed about DH than I was and you will be able to tell them the skin next to the lesion is where the antibodies are found. One must have a strong degree of suspicion if Celiac DH in order to get a proper biopsy. You already have that strong suspicion, now you just need to convince the Dr. to have the strong suspicion.

It would be nice to get a biopsy of it to be certain. I understand the positive skin biopsy is an accepted diagnosis for Celiac. But if they refuse, then the only thing you can do is stay strictly gluten free. One thing to be aware of is that if he has been gluten free for a significant period of time, the biopsy can be negative even if it is DH due to not having enough IgA antibodies in the skin. Also, I just read that his blood test was negative for Celiac. That is also very common for people who have DH. Nevertheless, they are Celiac and must avoid gluten entirely. In fact, people with DH are very sensitive to even trace amounts of gluten.

One other thought. Iodine causes the antibodies to react. Is it possible that he is reacting to iodine in table salt or shellfish? This can also cause the rash to break out.

I really think your son has Celiac DH and I really hope you are able to get a Dr. to listen to you. Keep advocating for yourself and your child even if the medical tests don't "prove" it. Being gluten free and switching to uniodized salt until the rash heals should control the outbreaks.