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

Do I Have Dh?


num1habsfan

Recommended Posts

num1habsfan Rising Star

not sure if you remember me posted about having that 'rash' from mid back to my neck...chest to face..and head..butt..first i got put on some hydrocortisone cream, but that only stopped the itch for a couple hours and it came back. I got put on Dapsone, beginning of january, after I suggested the doctor to put me on it. The 'rash' is not nearly as itchy as it used to be, and the redness is vanishing, but its not quite gone. But there IS a difference. The doc isnt convinced its DH and I dont feel like travelling 2 1/2 hours to get the dermatoligist to do a biopsy, and he knows that too. So i gotta stay on Dapsone for another 5 weeks yet. And go back to him and see what happens..

again, the 'rash' looks like milky filled pimples..so i dont know what to do..

~lisa~


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



Celiac.com Sponsor (A8-M):



cdford Contributor

Sounds like our version of DH anyway. If you don't want to travel a long distance to verify the DH, have you considered working with your doc to do a trial period of going gluten-free? It is the only thing that will fix the problem if it really is DH. Only problem is that it seems to take much longer for going gluten-free to make a big difference if you are dealing primarily with DH and not major celiac disease as well.

Yes, for those of you reading this and panicking, I know that if you have DH you also have celiac disease, but for some the DH is the primary indicator. and it seems to take longer to see changes. It sure is worth the effort, though, not to have those nasty, itchy places.

It might be worth your while to read some of the DH posts here and see how others have handled it. Good luck.

num1habsfan Rising Star
Sounds like our version of DH anyway. If you don't want to travel a long distance to verify the DH, have you considered working with your doc to do a trial period of going gluten-free? It is the only thing that will fix the problem if it really is DH. Only problem is that it seems to take much longer for going gluten-free to make a big difference if you are dealing primarily with DH and not major celiac disease as well.

Yes, for those of you reading this and panicking, I know that if you have DH you also have celiac disease, but for some the DH is the primary indicator. and it seems to take longer to see changes. It sure is worth the effort, though, not to have those nasty, itchy places.

It might be worth your while to read some of the DH posts here and see how others have handled it. Good luck.

I've been gluten-free since Feb 2003 and the supposed DH got the worst last summer/fall time. And being lactose intollerant, I am usually like 99% diary free :P

~lisa~

pixiegirl Enthusiast

Hmmm it makes me wonder if it is DH if you are gluten free...

I was only diagnosed in the fall of last year and I've had a rash on my foot and butt cheek for years, if I use cortisone they do tend to get better (not gone but better). No one ever knew what the rash was.

Then I got diagnosed and did a lot of research about being Celiac and of course I ran across information about DH and I though, Bingo, thats what I have. My rash didn't quite look like the pix on the internet but it resembled it close enough... since being gluten-free for about 4.5 months now the rash is better then it ever has been and doesn't itch at all any more and has shrunk down to about 1/3 the size it was on my foot and the one on my butt check (sorry to be so graphic) is totally gone. So I'm pretty sure that's what my issue was.

Perhaps you have your reasons for not wanting to drive a couple of hours to get a positive diagnoses but don't you think it would be worth it to be sure... that Dapsone is pretty powerful stuff (from what I've read, I've never used it) and I'd think that its not the best option to be using it if you don't have DH. I think your health is more important then a couple hour drive (I drive into Boston to see my doctor, 150 mile round trip every 2 months).

I'd consider getting a biopsy.

Susan

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,201
    • Most Online (within 30 mins)
      7,748

    Judy Wysocki
    Newest Member
    Judy Wysocki
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Xravith
      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
×
×
  • 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.