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.
