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 Question?

Colinsmom

By Colinsmom
in Dermatitis Herpetiformis

Recommended Posts

Colinsmom Newbie
Colinsmom
Posted

I am still convinced that the rash I have is DH, even though the biopsy I had was negative. I'm going back to the dermatologist and am going to try to get her to do another one in case the first one wasn't done correctly. I have a question about the appearance of the rash that I'm hoping someone can answer. When the blisters start to heal up and scab, do they actually leave a little hole in your skin until they are completely healed? This is what mine does and sometimes they take forever to completely go away. My rash looks exactly like some of the photos of DH I have seen, and nothing like the "urticarial vasculitis" that I was diagnosed with.

  • 2 weeks later...
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Colinsmom Newbie
Colinsmom
Posted
  • Author

Anyone??

babs-652006 Newbie
babs-652006
Posted
Anyone??

Hi, This is my first post here. Have been gluten free since Dec.2006. I wanted to tell you. My DH does leave holes in my skin. It has cleared up for 18 mos. Then I ate something not sure what. It came back with a vengeance. Mine is on my ankles and lower leg. Not sure if this helps but I have had several holes and then when it finally heals scars.... have a great week, babs

Colinsmom Newbie
Colinsmom
Posted
  • Author

Thanks for your reply Babs! I had another biopsy done last Wednesday and will get the results next week so we'll see if it shows anything different than the first one. The dermatologist took two samples, one from a blister and one from the adjacent skin, so at least I know it was done correctly this time. I'll let you know when I get the results.

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

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

      Thank you! It’s very easy to make seedy crackers. They are much more nutritious than commercial gluten free bread,
    2. Samanthaeileen1
      - Samanthaeileen1 replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

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

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

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

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

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

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      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.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,803
    • Most Online (within 30 mins)
      7,748
    MaryAlice
    Newest Member
    MaryAlice
    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
      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      By Samanthaeileen1 · Posted

      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
      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      By Wheatwacked · Posted

      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
      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      By RMJ · Posted

      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
      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      By Samanthaeileen1 · Posted

      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
      Just diagnosed today

      By JoJo0611 · Posted

      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.