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

Varying Degrees Of D.h.?


mosaicmom

Recommended Posts

mosaicmom Rookie

My daughter has had DH once- perhaps twice (maybe as a baby in conjunction with a stomach flu- on her diaper area), most recent, 4 years ago, providing what she has now isn't DH.

Like I said, it has shown up more in a classic sense without a doubt- 4 yrs ago but I'm having a hard time differentiating what is on her skin now.

I thought of taking a picture and trying to load it to show the forum to get feedback- but only one computer loads chips so I haven't gotten on that.

She's had atopic dermatitits all her life, and an allergic skin reaction to peanut products when she was younger- this is different than that. That would look more like a ringworm patch, with a scaliness to it after a week, kind of thick.

This is a bunch of tiny red bumps in an area on her forearm, but not enough to be considered a blister, and definitely not acne or ingrown hair. We tried to show it to the dr. but no response. One or two within the patch are red from scratching and they don't go away easily. (background, she has to stay glutened til the end of the month).

Tiny red bumps, some a tiny bit bigger, some red and opened from itching. Not flea bites either. She has them around her knees too.

Different than the rash 4 yrs ago, different from when and if it was when she was a baby. And only in small patches around her body- another place is on the back of her neck.


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

It does sound like DH. And yes DH can change in presentation. When I was your DD's age I looked like I was covered in poison ivy 12 months out of the year. The only times I didn't have oozing sores was for a month or so during and after a heavy dose of prednisone. By my teen years it was only showing up on the inside of my joints at the elbows and knees and the bottom of my feet and on my face it looked like severe acne. In adulthood it was mostly on my scalp, neck, face and my shoulders (I had long hair and used gluteny shampoos and hairdyes) with only occasional outbreaks on my arms and legs. My derm kept telling me I had 'pickers acne' even though he had no answer when I asked him if acne itched and burned. His answer for the blisters were that I had an infection from picking but he again had no answer for why the clear fluid in them burned the adjacent skin. He also never remarked on the scarring. DH leaves distinctive purple scars that take a very long time to fade.

Can you get her in to see a dermatologist? Some of them are now a bit more 'up' on DH than they were back then. He can biopsy the areas beside the lesions to look for the antibodies. Stay with her while he biopsies and if he biopsies the lesions themselves you will know that he doesn't know what he is doing with DH and to ignore it if he says that he has firmly decided that it isn't.

A diagnosis of DH is a diagnosis of celiac and many of us are blanketed under the atopic dermatitis diagnosis for years when derms are not familiar with it.

mosaicmom Rookie

Thank you for your reply. It's a web I'm trying to untangle from... all the misinformation for almost 17 yrs. I'm so frustrated.

I can't say that hers turn purple. What's funny is, I get like... one bump occasionally that ends up turning purple... but I'm not the one being tested and it surely isn't enough to go in there.

I'm going to cling to the one time it was DH, though the ped back then said it was contact metal reaction. NO! It spread everywhere like chicken pox looked, but wasn't.

Again, thank you.

mosaicmom Rookie

Ravenwood...

If the bumps are as I described, which aren't blistered, can a biopsy even be done? Do they just scrape?

ravenwoodglass Mentor
Ravenwood...

If the bumps are as I described, which aren't blistered, can a biopsy even be done? Do they just scrape?

Yes the area beside these could still be biopsied. They would use a very small 'punch' to take a bit of tissue. They do numb the skin first and it is not something that is really scarey or painful. In addition DH is not the only skin effects that we can get. My DD gets excema and my DS used to have small raised bumps all over his chest. Kind of like chicken skin. They never got red or itched and I can not for the life of me remember what the doctor called them. He had them most of his life. After a couple of months gluten-free they were gone.

Archived

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

  • 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. - catnapt posted a topic in Related Issues & Disorders
      0

      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

    2. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      how much gluten do I need to eat before blood tests?

    3. - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      Curious question

    4. - Amy Barnett posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Question

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,322
    • Most Online (within 30 mins)
      7,748

    avery144
    Newest Member
    avery144
    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

    • catnapt
      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
    • catnapt
      I am on day 13 of eating gluten  and have decided to have the celiac panel done tomorrow instead of Wed. (and instead of extending it a few more weeks) because I am SO incredibly sick. I have almost no appetite and am not able to consume the required daily intake of calcium to try to keep up with the loss of calcium from the high parathyroid hormone and/or the renal calcium leak.    I have spent the past 15 years working hard to improve my health. I lost 50lbs, got off handfuls of medications, lowered my cholesterol to enviable levels, and in spite of having end stage osteoarthritis in both knees, with a good diet and keeping active I have NO pain in those joints- til now.  Almost all of my joints hurt now I feel like someone has repeatedly punched me all over my torso- even my ribs hurt- I have nausea, gas, bloating, headache, mood swings, irritability, horrid flatulence (afraid to leave the house or be in any enclosed spaces with other people- the smell would knock them off their feet) I was so sure that I wanted a firm diagnosis but now- I'm asking myself is THIS worth it? esp over the past 2 yrs I have been feeling better and better the more I adjusted my diet to exclude highly refined grains and processed foods. I didn't purposely avoid gluten, but it just happened that not eating gluten has made me feel better.   I don't know what I would have to gain by getting a definitive diagnosis. I think possibly the only advantage to a DX would be that I could insist on gluten-free foods in settings where I am unable to have access to foods of my choice (hospital, rehab, nursing home)  and maybe having a medical reason to see a dietician?   please let me know if it's reasonable to just go back to the way I was eating.  Actually I do plan to buy certified gluten-free oats as that is the only grain I consume (and really like) so there will be some minor tweaks I hope and pray that I heal quickly from any possible damage that may have been done from 13 days of eating gluten.    
    • Jmartes71
      So I've been dealing with chasing the name celiac because of my body actively dealing with health issues related to celiac though not eating. Diagnosed in 1994 before foods eliminated from diet. After 25 years with former pcp I googled celiac specialist and she wasn't because of what ive been through. I wanted my results to be sent to my pcp but nothing was sent.I have email copies.I did one zoom call with np with team member from celiac specialist in Nov 2025 and she asked me why I wanted to know why I wanted the celiac diagnosis so bad, I sad I don't, its my life and I need revalidaion because its affecting me.KB stated well it shows you are.I asked then why am I going through all this.I was labeled unruly. Its been a celiac circus and medical has caused anxiety and depression no fault to my own other than being born with bad genetics. How is it legal for medical professionals to gaslight patients that are with an ailment coming for help to be downplayed? KB put in my records that she personally spent 120min with me and I think the zoom call was discussing celiac 80 min ONE ZOOM call.SHE is responsible for not explaining to my pcp about celiac disease am I right?
    • Amy Barnett
      What is the best liquid multivitamin for celiac disease?
    • Jmartes71
      I've noticed with my age and menopause my smell for bread gives me severe migraines and I know this.Its alarming that there are all these fabulous bakeries, sandwich places pizza places popping up in confined areas.Just the other day I suffered a migraine after I got done with my mri when a guy with a brown paper bag walk in front of me and I smelled that fresh dough bread with tuna, I got a migraine when we got home.I hate im that sensitive. Its alarming these places are popping up in airports as well.I just saw on the news that the airport ( can't remember which  one)was going to have a fabulous smelling bakery. Not for sensitive celiacs, this can alter their health during their travel which isn't safe. More awareness really NEEDS to be promoted, so much more than just a food consumption!FYI I did write to Stanislaus to let them know my thoughts on the medical field not knowing much about celiac and how it affects one.I also did message my gi the 3 specialist names that was given on previous post on questions on celiac. I pray its not on deaf door.
×
×
  • 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.