2.5 year old son diagnosed with DH and celiacs . . . .

[Carianne]

I recently was able to get a confirmed diagnosis of my sons unrelenting and misdiagnosed rash. It ultimately started shortly after he was introduced to solids although prior to that he had major reflux and gastro issues when switched to formula at 5 months old. He had trouble gaining weight and had developmental set backs due to his unrelenting discomfort. The first time the rash occurred was on his hands and elbows then more noticeably on his face. It was brushed off as normal rashes that often occur with young children. Contact dermatitis, eczema etc. , after a year of these rashes having some relief from hydrocortisone cream and calamine lotion my son broke out in full body hives after jumping around in his jump house with a croissant and just a diaper on. It was scary! We called nurses and almost hit the emergency room if it hadn’t been a case that responded to Benadryl thankfully. The doctors followed up with us afterwards and although they wanted to blame a possible random virus I asked for help from the allergy department. All those basic allergy tests came back normal, they wouldn’t test for food related ones this young. Two weeks later my son started preschool which was highly stressful for him and emotionally depleting. Two weeks into that the rash went crazy, full blown giant blisters that burst when he scratched them, he now was pretty much covered head to toe, everywhere but his stomach and feet. It was horrifying. The doctors brushed it off as impetigo, gave us antibiotics in cream and systemic form, didn’t work, then another round of antibiotics where I demanded a culture, he didn’t respond to that one, cultures came back after they put him through a THIRD round of antibiotics I was beyond reluctant to do to him ( we did pre and probiotics the whole time thankfully) but with no answers I felt helpless. It came back negative fore herpes and impetigo. That’s when I demanded to speak to dermatology. One hour in her office, an biopsy schedule 5 days later, and 9 days after that we got Dapsone cream and a diagnosis. We are refraining from oral dapsone as he is so young. I am NCGS and have Hoshimottos thyroiditis, (I have suspected for years it was misdiagnosed and was truly celiacs as I had gastrointestinal issues for two decades before I removed gluten) , going gluten free hasn’t been hard for me to do for my son, it’s been 4 weeks, no more blisters, but the rash is definitely taking its time to clear up. Any advice or suggestions is greatly appreciated. This has been so hard and heartbreaking to watch him go through and I so badly want my baby boy to feel better and kick this rashes butt! 

[trents]

Welcome to the forum, Carianne!

Quite a few of our forum members report that reducing iodine intake helps significantly with DH.

[Wheatwacked]

My son bloated up right after weaning. Thankfully no DH.  My mom said "you got what you gave" but we persisted and he was diagnosed with Celiac a month later after several biopsies and started on Nutramigen (hypoallergenic with complete nutrition.  It was the only one with choline back in 1976).  They make Nutramigen for Toddlers now.  

The same doctor said that by kindergarden the teachers would beg we put him on Ritalin, because he has ADD. Which did come about.  He was on Ritalin through High School.  Started him swimming competitively at 5.  Set several high school records that held for years after graduation and became a professional ocean guard, close to retirement now.  Have Hope

[knitty kitty]

@Carianne, welcome to the forum!

 Has your son been checked for nutritional deficiencies? 

Most Celiacs have deficiencies in the eight essential B vitamins.  Niacinamide Vitamin B 3 has helped my skin clear up from DH. 

 

The Role of Nutrition in Immune-Mediated, Inflammatory Skin Disease: A Narrative Review

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8840467/

[Scott Adams]

I'm sorry to hear about your son! This article may be helpful: