Possible Dh 6-Year Old

[bluewhitesky]

First of all I would like to thank everyone on these boards for sharing all of their experience and expertise. I have been reading voraciously in hopes of figuring out what is going on with my son, age 6. 

 

He has had a rash on his bum (upper cheeks), hips and lower back for over a year. It started with the chicken pox (or so we thought?) in January 2013 which mostly healed, but for a few areas. His bum and hips continued to have what looked like a few spots that weren't healing, he kept scratching too, so I thought that wasn't helping. The GP said yes, the lesions from chicken pox can take a while to heal.

 

I began to notice new spots  so I realized we were dealing with something else. It got much much worse in the fall and the Dr. prescribed hydrocortisone. Temp improvement, but more flare ups after.

 

For 2+ years he had also complained of occassional mild tummy aches, but around the time the rash started getting worse his tummy aches were getting worse too, usually at bedtime. Also noticed poison gas smelling farts.

 

Tried a gluten free trial for 2 weeks this January- tummy aches went and didn't return even when back on gluten. Noticed some improvement in rash after the 2 weeks but he went back on gluten for 1 month + to prepare for blood tests ordered by GP (transglutaminasen, total serum IgA). both negative.

 

Tele derm consult (GP sends photo of rash to pediatric dermatologist) diagnosis - molluscum. Even the GP agrees that it's not molluscum, but sends us on our way. I start my research, which led me here and to my stong feeling that it's DH.

 

I convinced the GP to give me an actual referral to an actual real-life dermatologist (I'm learning you have to push for what you want/need in the medical system). I was expecting to wait months for the appointment (Canadian system...we are short of dermatologists in my city) so we are doing strict gluten free to hopefully get him some relief from the itch. It's been almost 3 weeks gluten-free and after 10 days his old lesions actually started healing, he's had several days with no itching at all. He has had new spots pop up, but overall there is a definite improvement. 

 

Now today I got a call that we actually have a derm appointment in 2 weeks!! Unbelievable for my city. I got the name of this derm from someone with celiac who sees him for DH, so I expect him to recognize it to rule it in or out.

 

Other info:

- rash is bilateral

-I (mom) have can't eat gluten (tested negative years ago while gluten free...know better now)

-my niece (DS's first cousin) had dx'd celiac disease, her dad probably has celiac disease (untested)

-I did the iodine patch test, just for the heck of it with 2.5% and he freaked out immediately when I touched him with an iodine-soaked cotton ball. Thinking I touched a lesion by mistake I did it again in another spot with the iodine on a band-aid and he reacted with itching, redness and swelling

 

 

 

All that to ask:

1. Should I put him back on gluten for the two weeks before the appointment so the derm will see it at it's worst?

 

2.Does this sound like and look like DH to you? Does it look like anything else?

 

Many thanks to those of you who got this far!!

 

Here's a picture from November. It got worse after that.

 

[squirmingitch]

It could be dh, then again it could be something else. It's really your call as to putting him back on gluten right now. I will say that if the derm wants to do a dh biopsy, he's going to have to be on gluten for 2 months prior. Sorry! 

 

If that's all the tests the GP ordered then he did not do the full celiac blood panel AND those with dh test negative on the blood panel 60% of the time. AND there's the kid factor ~~~ special things apply there & I don't know all the in's & out's of that to be able to tell you. There is a forum dealing especially with kids & you should read & ask on there about the blood & be sure to mention you think he has dh ~~~ there are those on there with kids with dh. 

 

If the derm is familiar with dh then you should be okay with that derm. That's the good news. 

 

I've read those who say the iodine test is bull & those who say it isn't. So that one is a big question mark.

Yes, it does sound & look like it could be dh IMO. It probably looks like any other # of things too. I can't say exactly what but I'm sure there are quite a few things out there that look like that.

 

I'm sorry I can't be of more help to you but at least you have a derm who another celiac with dh goes to. That's more than most people have. 

[bluewhitesky]

It could be dh, then again it could be something else. It's really your call as to putting him back on gluten right now. I will say that if the derm wants to do a dh biopsy, he's going to have to be on gluten for 2 months prior. Sorry! 

 

If that's all the tests the GP ordered then he did not do the full celiac blood panel AND those with dh test negative on the blood panel 60% of the time. AND there's the kid factor ~~~ special things apply there & I don't know all the in's & out's of that to be able to tell you. There is a forum dealing especially with kids & you should read & ask on there about the blood & be sure to mention you think he has dh ~~~ there are those on there with kids with dh. 

 

If the derm is familiar with dh then you should be okay with that derm. That's the good news. 

 

I've read those who say the iodine test is bull & those who say it isn't. So that one is a big question mark.

Yes, it does sound & look like it could be dh IMO. It probably looks like any other # of things too. I can't say exactly what but I'm sure there are quite a few things out there that look like that.

 

I'm sorry I can't be of more help to you but at least you have a derm who another celiac with dh goes to. That's more than most people have. 

Thank you so much for your reply, squirmingitch. Yes, you're right about having to go back on gluten for the biopsy. I didn't realize it was for 2 whole months though...there's the common problem though, right? Do I really want to put him through all that itching??  I was already thinking that we wouldn't be able to get the biospy done for a while anyway because we had applied hydrocortisone to the rash...I'm sure I read that steroids will negate the biospy (also he had a few doses of an oral steroid, and regularly uses a steriod puffer for his asthma...not sure if those count too). So regardless...we will wait.

 

You're right, we're lucky to have a derm who will hopefully know what he's looking at. 

 

I've been reading the kids forum too....so many ins and outs and false negatives for this reason and that reason. It's been making my head spin.

 

I'm also feeling bad now about doing the iodine test. The spot where I just touched him for a second with the cotton ball is now, a day later, covered with a new crop of itchy blisters. 

[squirmingitch]

It's a real sticky wicket with kids. If we were talking about an adult, I would say go gluten free & forget about a dx but with kids, they need that dx for school, college & the military so it's important to get one if possible.

 

And yes, the steroids ARE a problem. They will negate any positives on a test. He will need to be off all steroids for at least 2 months. However, if he has celiac disease, his asthma may greatly improve after being gluten-free for a while or it could possibly disappear altogether. 

 

I am hoping perhaps the derm will dx without a positive biopsy. Be sure to explain the steroid usage & the pitfalls it creates.

 

((((HUGS))))) 

Let us know how things go please.

[bluewhitesky]

It's a real sticky wicket with kids. If we were talking about an adult, I would say go gluten free & forget about a dx but with kids, they need that dx for school, college & the military so it's important to get one if possible.

 

And yes, the steroids ARE a problem. They will negate any positives on a test. He will need to be off all steroids for at least 2 months. However, if he has celiac disease, his asthma may greatly improve after being gluten-free for a while or it could possibly disappear altogether. 

 

I am hoping perhaps the derm will dx without a positive biopsy. Be sure to explain the steroid usage & the pitfalls it creates.

 

((((HUGS))))) 

Let us know how things go please.

Yes, I was thinking of his asthma today. It's been under control for the last 2 winters, no steroid puffer needed, until a very bad episode this winter, just around the time of his rash worsening, after reintroducing gluten to prepare for his blood tests. 

 

I will definitely explain about the steroid usage. I've got it all documented. Plus a few pages of notes and links that I've learned from this forum. Seriously, squrimingitch, et al, you are amazing. I have learned so much. 

 

I will definitely keep you posted. Thank you so much for the support.

[squirmingitch]

Great! Being well prepared can make it or break it. 

 

You're so welcome. That's what all of us are here for. Sort of a "pay it forward" thing. There were people here who helped me immensely when I knew nothing & was floundering in the murky waters.