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

DH?


Christinafko

Recommended Posts

Christinafko Newbie

Hey everyone. I'm kinda new to even knowing about DH but I was wondering if my symptoms sound like DH at all. I don't have health insurance so unless I want to pay everything out of pocket I just can't go to a Dr right now for testing. Anyway, I've had this rash on and off starting a few years ago and for a long time I thought I was just having a reaction to something topical. At first I'd go a long time between outbreaks and it was only on my right middle finger between the lower knuckles. Then about a year or so ago, it started in the exact same spot on my other hand. And now it's starting on the backs of both my elbows. The bilateral/mirroring of this rash is what brought me to DH when I googled. The rash started out as small dots that itched really bad and as it progressed on my hands it turned into all kind of rough/bumpy skin between the knuckles and I get cracks/cuts that sting and bleed too. Right now it's still the small bumps on the elbows bc that just started a few weeks ago. Today, the rash is better and not as itchy (the first day in forever that I noticed it didn't itch!)  I decided to try a gluten free diet to test if this rash is related but have only just started that this week and I've read that it can take a while for gluten-free diets to show improvement on DH. Do these symptoms sound like DH possibly? I have a couple kinda-friends that are nurses and they've just said 'it must be contact dermititis and weird that it's mirrored but eh put cortisone on it.' Cortisone helps alleviate the itching for a short time but does nothing to get rid of the rash and of course does nothing for the stinging/cuts which I've used calendula ointment or neosporin on. Thoughts? TIA!


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



Celiac.com Sponsor (A8-M):



squirmingitch Veteran

It could be, it could not be but it seems like you're starting to get it other places now besides just on your fingers. The only way to know for sure is to get a dh biopsy. You have to make sure they take the sample on a clear area adjacent to an active lesion AND you MUST have been continually eating gluten or else you will get a false negative.

Yes, once going strict gluten-free, the dh rash takes a while to go away & never reappear. Time for this to happen varies from person to person.

Victoria1234 Experienced

Welcome.

Sounds a lot like dh to me..... with a gluten-free diet it took mine almost a full year to completely clear up. Every time I had a cc issue it came back! Then every time I had a gluten issue the area would itch some but the rash itself wouldn't appear. It was weird. Anyway go get it biopsied asap and keep eating gluten until you get it done. Make sure they do it the right way! 

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. - CatS commented on Scott Adams's article in Winter 2026 Issue
      5

      Are Gluten-Free Processed Foods Making You Sick? (+Video)

    2. - Samanthaeileen1 replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

    3. - Wheatwacked replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

    4. - RMJ replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

    5. - Samanthaeileen1 replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

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

    • Total Members
      132,800
    • Most Online (within 30 mins)
      7,748

    CPeck
    Newest Member
    CPeck
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
    • JoJo0611
      I have been diagnosed with coeliacs disease today after endoscopy, bloods and CT scan. I have also been diagnosed with Mesenteric Panniculitis today. Both of which I believe are autoimmune diseases. I have been told I will need a dexa scan and a repeat CT scan in 6 months. I had not even heard of Mesenteric Panniculitis till today. I don’t know much about it? Has anyone else got both of these. 
×
×
  • 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.