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

Dermatitis Herpetiformis Questions


susanm

Recommended Posts

susanm Apprentice

Hi, I had a negative endoscopy, but have been gluten-free since August 2008. Last week, I started getting a really itchy rash. It wasn't helped by antihistamines and steroids didn't do a thing. I've been looking up pictures, and it seems to be fairly consistent with what the celiac rash seems to be.

I have little red dots on my thighs, and my arms and torso itch like crazy, especially at night, and they have red spots on them too. I know I did something stupid last week. I was making myself rice pasta. I scooped out my pasta and put in my son's wheat pasta to cook. When I was draining his pasta, I started picking at the last pieces of rice pasta that didn't get scooped out and ate them. I know, dumb, but it didn't dawn on me until I started getting itchy some after that (I don't remember how long it took to start).

Does this sound like it could be dermatitis herpetiformis? What can one do to make it more bearable?


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



Celiac.com Sponsor (A8-M):



ang1e0251 Contributor

It could be DH. When I had it, my Mom had some perscription cream that helped me so I'm sorry I can't help you with the itchy stuff. I don't know how long you've had this but my experience has been that when I stopped eating the gluten, the rash began to heal beginning with the itch starting to back off. If it's getting worse and it is DH, then it's something you are still ingesting. I only get it now if I eat something every day that bothers me. Last spring it was the coffee flavorings I was using 6 days a week. So look for Sneaky Gluten if your rash isn't improving.

CMG Rookie

I have a similar question. I was gluten-lite from August 2007; positive genetic test December 2008; gluten challenge january/february 2009; followed by negative biopsy.

During my gluten challenge I broke out in what I thought was some weird kind of acne around my hairline, on my neck and a bit on my scalp. It just kept getting worse and tremendously itchy. By the time I made the connection that it might be DH and then more time to get a dermatologist appointment, the rash had almost cleared. So I cancelled the appointment. Now since being completely gluten-free (with a few slips here and there) since February 25, I keep getting a really itchy scalp with a few small blistery bumps.

So here are my questions -

Does this sound like DH?

Should I see a dermatologist?

How big to the blisters have to be to get a reasonable DH biopsy?

I guess I shouldn't care so much about diagnosis (or lack thereof) anymore, since I know the gluten-free diet is the answer to many of my issues. But there's still this nagging desire for a diagnosis...

ang1e0251 Contributor

If you need a dx, go to the home page and look at the DH information file. There is a report written by a dermatologist who explains exactly how the biopsy should be done. What you have could be DH. Or you might be allergic to wheat, a totally different condition that is topical. You should check all products coming into contact with your skin and scalp. Don't use any product with wheat or oatmeal. I'm not sure they are bad but I also stay away from any one that uses "natural colorings or thickeners". Wheat and oatmeal are natural but they make me breakout!

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. - RMJ replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      nothing has changed

    2. - asaT replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      nothing has changed

    3. - nanny marley replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      IBS-D vs Celiac

    4. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      45

      Supplements for those Diagnosed with Celiac Disease

    5. - par18 replied to Woodster991's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Is it gluten?

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

    • Total Members
      133,342
    • Most Online (within 30 mins)
      7,748

    Muhammad
    Newest Member
    Muhammad
    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

    • RMJ
      This may be the problem. Every time you eat gluten it is like giving a booster shot to your immune system, telling it to react and produce antibodies again.
    • asaT
      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin (3) and low vitamin D (10). I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get this test? So I did quit gluten and had the biopsy. It was negative for celiacs. I continued gluten free with iron supps and my ferritin came back up to a reasonable, but not great level of around 30-35.  Could there be something else going on? Is there any reason why my antibodies would be high (>80) with a negative biopsy? could me intestines have healed that quickly (3 months)?  I'm having a hard time staying gluten free because I am asymptomatic and i'm wondering about that biopsy. I do have the celiacs gene, and all of the antibody tests have always come back high. I recently had them tested again. Still very high. I am gluten free mostly, but not totally. I will occasionally eat something with gluten, but try to keep to a minimum. It's really hard when the immediate consequences are nil.  with high antibodies, the gene, but a negative biopsy (after 3 months strict gluten-free), do i really have celiacs? please say no. lol. i think i know the answer.  Asa
    • nanny marley
      I have had a long year of testing unfortunately still not diagnosed , although one thing they definitely agree I'm gluten intolerant, the thing for me I have severe back troubles they wouldnt perform the tests and I couldn't have a full MRI because I'm allergic to the solution , we tryed believe me  I tryed lol , another was to have another blood test after consuming gluten but it makes me so bad I tryed it for only a week, and because I have a trapped sciatic nerve when I get bad bowels it sets that off terribly so I just take it on myself now , I eat a gluten free diet , I'm the best I've ever been , and if I slip I know it so for me i have my own diagnosis  and I act accordingly, sometimes it's not so straight forward for some of us , for the first time in years I can plan to go out , and I have been absorbing my food better , running to the toilet has become occasionally now instead of all the time , i hope you find a solution 🤗
    • asaT
      I was undiagnosed for decades. My ferritin when checked in 2003 was 3. It never went above 10 in the next 20 years. I was just told to "take iron". I finally requested the TTgIgA test in 2023 when I was well and truly done with the chronic fatigue and feeling awful. My numbers were off the charts on the whole panel.  they offered me an endoscopic biopsy 3 months later, but that i would need to continue eating gluten for it to be accurate. so i quit eating gluten and my intestine had healed by the time i had the biopsy (i'm guessing??). Why else would my TTgIgA be so high if not celiacs? Anyway, your ferritin will rise as your intestine heals and take HEME iron (brand 4 arrows). I took 20mg of this with vitamin c and lactoferrin and my ferritin went up, now sits around 35.  you will feel dramatically better getting your ferritin up, and you can do it orally with the right supplements. I wouldn't get an infusion, you will get as good or better results taking heme iron/vc/lf.  
    • par18
      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test" itself. If you were gluten-free and got tested, you more than likely would test "true" negative or just negative. This means that the gluten-free diet is working and no anti-bodies should be present. I know it sounds confusing and if you don't agree feel free to respond. 
×
×
  • 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.