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

Carianne

By Carianne
in Dermatitis Herpetiformis

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Go to solution Solved by trents,

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Carianne Newbie
Carianne
Posted

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! 

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trents Grand Master
trents
Posted
  • Solution

Welcome to the forum, Carianne!

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

Wheatwacked Veteran
Wheatwacked
Posted

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 Grand Master
knitty kitty
Posted

@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 Grand Master
Scott Adams
Posted

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

 

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    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
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    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
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      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      Contact them.
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