Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Dh Help For My Teenager

kyss

By kyss
in Dermatitis Herpetiformis

Recommended Posts

kyss Rookie
kyss
Posted

:( I am so worried about my 13 year old....she has had "eczema" since she was born, and treatment helped before the whole steroid thing, but now it is worse. I looked on the internet because I have Celiac Disease and my sister informed me it is possible to have just the DH and no GI stuff....well the photos on one website looks just like my daughter....she has it everywhere (buttocks, legs, chest, stomach, neck, arms. She says she feels as though she baked in the sun and then someone put her in a bee hive and the are all stinging her. I don't know what to do to help....I would take her back to the dermatologist, but when I told her I thought it was DH she turned to my daughter and said...."do you have GI symptoms too....?" So I thought you had to have both symptoms....now I find you don't. Please help...I've heard of the medication cal Dapsone, but can she take this? I live in the Denver Colorado area if anyone knows of a dermatologist who will listen when I say she had DH.....Thanks for you time and any advice is appreciated!

Kelly

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

Celiac.com Sponsor (A8-M):


lovegrov Collaborator
lovegrov
Posted

A decent dermatologist should at least do a biopsy on the stuff to see if it's DH. My dermatologist knew as soon as he saw it what it was.

I had DH for more than 20 years with no GI or other symptoms at all. My father had it for 30 years with no GI.

I assume a person your daughter's age can take dapsone and if it's that bad she should until she's been gluten-free for a while. You need to find a doctor who will take this seriously.

You DO NOT have to have GI symptoms to have DH or even celiac disease.

richard

kyss Rookie
kyss
Posted
  • Author

Thank you so much for responding. Both my children have been tested (blood for both and endoscopy on my youngest) and they all came back inconclusive...so she may not have Celiacs, but could have DH anyway. I am so proud of the fact that both my children have been gluten free for 2 1/2 weeks now....so I will find that dermatologist and MAKE them do what needs to be done to help her.....Thank you again!

Kelly

chrissy Collaborator
chrissy
Posted

if she has DH---she has celiac.

christine

Pegster Apprentice
Pegster
Posted

If the rash your daughter has is like the rashes you've seen pictures of and YOU have Celiac, I'd say your diagnosis is probably correct. My Celiac was diagnosed by a dermatologist by skin biopsy. I never had GI problems serious enough to make a Dr. notice. The DH rash tends to be sort of a mirror image effect...if it's on one elbow, it shows up on the other, etc. And Christine is correct... if you have DH, then you have Celiac.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,960
    • Most Online (within 30 mins)
      7,748
    jujubean
    Newest Member
    jujubean
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Colonoscopy with large area of inflammation

      By trents · Posted

      Because you have already had the "gold standard" test done, and because you have some experiential evidence that removing gluten from your diet causes you to feel better, it would make sense to begin the gluten-free diet as you wait for biopsy results.
    • growlinhard1
      Colonoscopy with large area of inflammation

      By growlinhard1 · Posted

      I wasn't given any blood tests. I think I should try the gluten free diet because when I cut it out a few weeks ago for just a couple of days, I know I started feeling better. The difference was actually pretty dramatic. When I learned gluyen free earing may cause false negative biopsy results, I went back to gluten full force and feel like you know what × 10. Do you feel it would be okay since the gold standard for diagnosis is behind me or should I wait for biopsy results? In your opinion, of course. I know you can't offer me medical advice.
    • Wheatwacked
      3 year old gluten intolerance?

      By Wheatwacked · Posted

      My mom said when he was born "you got what you gave".  Until 5 years of he was gluten free, was well liked by his friends, although did get them into mischief at times, a leader of his group of friends, physically active and paid attention, as much as any preschooler.      At 5 years old we moved to my hometown and had to rely on our friends, my pediatrition (still the best doctor I ever had), my wife was a nurse so her aquaintences and doctor friends.  They all still believed back in 1980's that Celiac was a growing phase, and he wanted to be like everyone else.  So everyone's opinion was that if he tolerates gluten with no symptoms he had outgrown it.  He passed the summer at the beach (lots of vitamin D) was a prodegy swimmer and the whole team liked him and he fit in well.     Fall came, he started kindergarden school, less sun ( low vitamin D, Seasonal Affective Disorder is real), new people and a morning schedule that did not end up in a fun, active day at the beach.  Getting him going got more difficult.  By the first teacher-parent meeting in December, they brought up the subject.  He was disruptive in class.  By then we had forgotten what his doctor said 5 years earlier.  So he was diagnosed as ADHD.      Competitive swimming was his saving grace.  All though High School he continued to swim with his competetive team most days after or before school and with the beach club team in addition in the summer.  Some records he set lasted years.  After high school he became a professional ocean guard. Now getting close to retirement.  But always had difficulty concentrating on schoolwork.      He, and his wife, incidentally, is now having the health problems that I just have just gotten rid of.  I had forgotten what the doctor said to us 60 years earlier, bout Celiac Disease being hereditory.  He is starting to listen, but still in denial.  Loves his pizza.  At 63 I had arthritis, fibromyalgia, sleep apnea, enlarged prostate, alcoholism and I got dumber as the years passed.  They all are gone with gluten free and vitamin replenishment. My wife had allergies, endometriosis, fertility problems and miscarriages.  She passed 18 years ago. Sorry for the long story.  Reminds me of a Joni Mitchell song.  "L've looked at life from both sides now. From win and lose, but still somehow, it's life's illusions I recall. I really don't know life, at all"  
    • Beverage
      Vaccines

      By Beverage · Posted

      I feel for you. I've had an interesting history with some vaccine, especially t-DAP. One time after just getting it, I remember walking from the pharmacy to my car, reaching for the door handle of my car as my last memory, then waking up slumped into my car with the door wide open hours later. Nobody even knew I was there. I did get a bad cut from rotting rusty wood and probably animal droppings, and it had been 10 years, so I got a booster recently, but took someone with me. My doc back then did say he was concerned about my reactions to vaccines, but we never talked about what alternatives there might be. What is your risk when you do get sick? For me, I almost always end up needing prednisone and antibiotics and have to crawl back to life for months after those are done, prednisone really messes me up, raises my blood pressure to stroke levels, and the antibiotics mess up my intestines really bad. I have to take mega doses of C and D and B's, especially flush niacin, and probiotics.  So preventing flu is critical for me since I always get a long term negative effect from the treatment. I did a lot of research, traditional and alternative medicine, and they all say high vitamin D levels are crucial to so many kinds of illnesses, including flu, cancer, etc.  People with high D during covid had much better outcomes.  I always tested low in D even with high oral supplementation of D3 and K2.  So last year I saved up and bought a real vitamin D lamp, not one of those cheapie ones that you can get on Amazon that don't work, seriously, those are junk. Wow what a difference with a real D Lamp. We haven't been sick all year, which is rare for me, even after being around several sick people or people that came down sick just after visiting. I use the lamp about every other day or if I've been in a group of people or around anyone sick.  I have not yet had my D levels retested since starting with it (will do that at annual check up later this year), but I have not gotten a cold or flu (knock on wood), feel better than usual for a cold wet winter in the NorthWest, and my hair is growing in like crazy, all signs of improved vitamin D levels. It doesn't take long to use, just a few seconds and first and gradually build up. I now do it for a count of 200, which is about 3 minutes. I don't remember all the details on how the body creates its own vitamin D, but I do remember that the body makes a reaction on the skin and you don't want to wash that off for a few hours.  So I do the D Lamp right after my shower, not before.  There are 2 reputable ones that I found in my research: Sperti Vitamin D Lamp uses florescent tubes, you stand and turn in front of it, be sure to get the VITAMIN D LAMP, not the tanning lamp:  https://www.sperti.com/product/sperti-vitamin-d-light-box/ Chroma Vitamin D Lamp is LED's, you can stand and turn in front of it or hold it in your hand and wave it over your body, always keeping it moving so you don't burn:  https://getchroma.co/products/d-light-vitamin-d-light-device-uvb-red-nir AND YOU MUST WEAR SPECIFIC EYE PROTECTION WHEN USING, KEEP ALL PETS AND OTHERS AWAY, THE GLASSES ARE PROVIDED WITH THE D LAMP. I got the Chroma D Lamp when they had a huge sale last year, it's a small start-up company in Seattle.  Sperti is a larger longer term well known, and you can sign up for a 10% discount on their web site.  If Chroma had not had the sale when I was going to buy one, the Sperti would have been fine. They both often have back orders on them, but they do deliver as promised. I have read various articles on the effectiveness of the flu vaccine for example, not always highly effective every year.  Since your risk with vaccines is high, or if your risk of bad illness if you get sick is high, maybe consider how to mitigate both in another way, perhaps a D Lamp. 
    • trents
      Facial pain

      By trents · Posted

      That's what came immediately to my mind as well, Bell's palsy. And don't assume every medical problem is connected to her celiac disease as there is still something known as coincidence. Get this checked out by medical professionals and push for some serious testing. Don't let them brush you off. Be appropriately assertive.
×
×
  • Create New...