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

Is It True? Can A Dermatologist Test For Dh?

kactuskandee

By kactuskandee
in Dermatitis Herpetiformis

Recommended Posts

kactuskandee Apprentice
kactuskandee
Posted

I recently went to my first celiac disease support group meeting and when the discussion of DH came up I asked how you knew if you had it. (I haven't had any blatant symptoms, only ones that could possibly be DH but could be something else again too.) I was told by a member (a ten year diagnosed celiac disease) that a dermatologist could, in fact, test you to see if you had DH. We didn't get around to how since the subject changed but was wondering if anyone has been tested and if so, how they do it..blood work, skin biopsy, what?

Thanks,

Kandee

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

Celiac.com Sponsor (A8-M):


pixiegirl Enthusiast
pixiegirl
Posted

Well someone has to be more expert on this then me, but I've had an unexplained rash on my foot for years and after I found out I had to be gluten-free I did some research on DH. Yes your dermatologist can test for it and if I remember correctly oddly enough they take a small piece of healthy tissue (biopsy I guess) next to or near the DH skin problem.

I'm sure someone that has had this done can explain it better. My DH (I'm sure thats what it is) is not extensive and its looking somewhat better since I've been gluten free (since september 2004). So I'm hoping it will slowly disappear on its own with my gluten-free diet.

Susan

cdford Contributor
cdford
Posted

That's a pretty good description according to what my dermatologist said. She also said that it is different than the usual biopsy in that it is time sensitive so they have to plan ahead a little more when they schedule it so that the lab gets it picked up more rapidly. Might want to keep that in mind when you make the appt and ask if that holds true at your doc . It may be an insurance issue with mine since I am required to use a specific lab in order for it to be covered.

I had DH for most of my life but we wrote it off as being extremely sensitive to an odd poison ivy outbreak or allergies. I would get "PI outbreaks" even in the winter. We thought I had just come into contact with it from summer gardening tools or a neighbor burning off their land, that sort of thing. Now that I know what it is and have had a DH outbreak and PI concurrently, I know that they even "itch" differently.

When I accidently get into some gluten, the outbreak begins with itchy, sensitive feeling skin. It gets kind of reddish and then up comes the rash. Usually the rash arrives within 24-48 hours after the initial symptoms, has what looks similar to pus pockets you might see with PI, an ant bite, or chicken pox though whiter, and "itches" intensely. My experience is that the "itch" is more like having a few hundred tiny needles tapping at you from under the skin...so much so that you just want to dig them out with your fingernails. After the initial outbreak begins to clear, they come and go for five or six months. They scab over and scar over, then break back open again off and on. They can leave discolored areas on the skin that can be cleared up with a lot of effort and Mederma or a similar product. Once you know what it is, you can sense an outbreak coming and recognize the differences between it and other problems. It takes a little experience, though.

Also, if you scratch much you can trigger a secondary infection that requires an antibiotic to clear it up. Keeping them moist seems to help. I use Clindagel and then keep it moist with a product containing petroleum jelly and some natural ingredients (camphor, methol, etc) to help ease the itch. Your dermatologist might have some different suggestions.

While the outbreaks I have read seem to be in a different location, mine often begin in my hairline, on my chin, and on my neck and shoulders. Sometimes they will also be on my arms, trunk, and legs. My daughter's usually arrive on her legs then "spread" to her arms and face. This spreading factor combined with the intense itchiness is what I think caused us to associate it the PI...not having a clue about DH at the time.

From what I have read and my own experience, it takes more than a year gluten-free for the rash to fully disappear. I was closer to a year and a half though I did see progress after a shorter period of time.

Hope this helps. The good news is that if it is associated with the celiac disease/DH problem, going gluten-free will eventually correct it. Don't be surprised it you have it a little worse initially upon going gluten-free. Ours did but got much better the longer I stayed gluten-free.

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...