Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Dermatitis Herpetiformis In Toddlers...

Sarawatson5665

Recommended Posts

Sarawatson5665 Newbie
Sarawatson5665
Posted

Are there Any Moms that have a toddler with dermatitis herpetiformis, If so please i would like to know more about how u noticed they had it and what tests were done to figure it out.. my daughter i believe she has it but im not so sure and the drs here kinda suck at finding it..

TY In Advance...

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


nmlove Contributor
nmlove
Posted

Hi there, my two year old has a suspicious rash too. His older brother (4) was recently diagnosed with celiac and now my younger one's bloodwork came back positive. I wouldn't be surprised if the rash is related. I actually thought it was eczema, as did the pediatrician. I knew nothing of dh or celiac disease. Now, I look at it differently. Both my sons had infant eczema. The oldest slowly outgrew it while the youngest did not. And, looking back, I see that it actually changed. But of course I had reasons. It was more scabby on his butt/low back because he was scratching. His diaper area was more blistery because of coming into contact with pee/poop. Sometimes he would cry because the itching was so bad but I knew how that was because I get the same thing on my feet. You could scratch to you're raw and it wouldn't stop itching. I'd dutifully put on lotion and the prescription hydrocortisone cream for it to kind of work but not really (would ease it for the night but would never make it go away). I look for this rash to disappear once he's been gluten free for awhile. At least I hope so!

As for testing, I've heard that you need a skin biopsy - of a section of clear skin next to the rash.

Sarawatson5665 Newbie
Sarawatson5665
Posted
  • Author

Thank you , i was scared it was going to be that, my daughter has the same issue as you desrcibed with your son, the scabbed hers go on the back of her neck her arms her legs, her diaper area is just like your sons, she cant have juice for that reason..

Thank you again so much for the input

Hi there, my two year old has a suspicious rash too. His older brother (4) was recently diagnosed with celiac and now my younger one's bloodwork came back positive. I wouldn't be surprised if the rash is related. I actually thought it was eczema, as did the pediatrician. I knew nothing of dh or celiac disease. Now, I look at it differently. Both my sons had infant eczema. The oldest slowly outgrew it while the youngest did not. And, looking back, I see that it actually changed. But of course I had reasons. It was more scabby on his butt/low back because he was scratching. His diaper area was more blistery because of coming into contact with pee/poop. Sometimes he would cry because the itching was so bad but I knew how that was because I get the same thing on my feet. You could scratch to you're raw and it wouldn't stop itching. I'd dutifully put on lotion and the prescription hydrocortisone cream for it to kind of work but not really (would ease it for the night but would never make it go away). I look for this rash to disappear once he's been gluten free for awhile. At least I hope so!

As for testing, I've heard that you need a skin biopsy - of a section of clear skin next to the rash.

  • 1 month later...
TerryK Newbie
TerryK
Posted

I believe my daugher who is now 7 had dermatitis herpetiformis as a toddler. She was diagnosed at 14 months with Celiac but had huge blisters on her bottom all the time which she would then scratch & it turned into a scabby mess. The Drs. told me she didn't have it b/c children do not get it. I believe they are wrong. Now if she does get gluten by accident the first thing she gets is a rash. She now gets the rash on her bottom, back of legs, around the ankles & underarms.

Are there Any Moms that have a toddler with dermatitis herpetiformis, If so please i would like to know more about how u noticed they had it and what tests were done to figure it out.. my daughter i believe she has it but im not so sure and the drs here kinda suck at finding it..

TY In Advance...

strawberrygm Enthusiast
strawberrygm
Posted

i am also interested in hearing the answers to this, as my 2 yr old is getting unexplained diaper rashes and my 4 yr old has been breaking out on his face. their older sister has celiac, but no skin issues thankfully. of course once one child or family member has celiac, its gonna make me think everything they get is related.. =)

we live in podunk as well, so getting diagnosed isnt easy here either.

nmlove Contributor
nmlove
Posted

Hey, just wanted to follow-up from my previous post. My 2 year old's been gluten-free for 2 months and his rash is gone! I still see eczema bumps but the diaper area rash is no more. But the few times he's had gluten accidentally I can see it start to pop out again.

mommaofthreebeans Rookie
mommaofthreebeans
Posted

Hi everyone I feel like I am reading stories about my own baby! lol

He has extreme "eczema" on his legs arms and trunk, buthis diaper area is the only "clear" area.

Is that uncommon?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


  • 2 months later...
mommaj Newbie
mommaj
Posted

This is the way that both of my babies were (for about 5 years... really severe all over except no diaper rash or eczema on diaper area). I'm still waiting for the blood test to come back on my daughter. If she's positive, of course my son will be tested too.

Hi everyone I feel like I am reading stories about my own baby! lol

He has extreme "eczema" on his legs arms and trunk, buthis diaper area is the only "clear" area.

Is that uncommon?

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

      @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...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

      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...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

      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.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,328
    • Most Online (within 30 mins)
      7,748
    AndiSchweb
    Newest Member
    AndiSchweb
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

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

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • 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. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.