Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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 biopsy

weebl

By weebl
in Dermatitis Herpetiformis

 Share

Recommended Posts

weebl Apprentice
weebl
Posted

About two weeks in to my gluten challenge. I guess you could say it's going well. 

It has gotten easier psychologically to eat foods containing gluten, and I have managed to include significant gluten in each meal, each day. 

Reaction in terms of my suspected DH has been as expected, and the rash and itchiness is back in full force. 

Some Googling seems to indicate that the ATTG blood test in this province actually contains most if not all of the full Celiac panel. So that is good. But I also know with DH, I will still likely test negative. 

I have a December appointment booked with my family doctor. I plan on going to the lab for blood work 1 week prior (and plan to stay on gluten until after I see my doctor). 

I also requested that I have a biopsy done and this is where I need help. 

Those who have had it, is it always a punch biopsy? Is there an authoritative source online I can print off regarding the proper procedure to my doctor? (I suspect he will have already looked into that, but I don't want to leave it to chance). 

Lastly, once my appointment is done, do I go gluten-free again at that point or should I wait for the biopsy? Assuming of course the blood work didn't come back positive, in which case the biopsy will be unnecessary. 

 

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

Celiac.com Sponsor (A8-M):


squirmingitch Veteran
squirmingitch
Posted

https://celiac.org/about-celiac-disease/related-conditions/dermatitis-herpetiformis/

I would also print this out & bring it b/c the diagnostic criteria in regards to dh & celiac changed in 2012. Since then, all that is required is a positive dh biopsy -- no further testing is needed.

http://www.cureceliacdisease.org/faq/can-a-skin-biopsy-for-dermatitis-herpetiformis-dh-confirm-celiac-disease-or-is-an-endoscopy-still-needed/

 

squirmingitch Veteran
squirmingitch
Posted

BTW, you don't have to kill yourself with gluten. A bowl of pasta or a slice of bread or a couple of crackers each day is enough. You don't have to eat gluten at every meal. Remember, every time you eat gluten, those antibodies are being deposited under your skin. Once there, they are like little grenades just sitting until something triggers them to explode so don't eat any more gluten than what it takes to get the job done.

Also, you could read this for when the time comes & you go gluten free again. The Newbie 101 which is pinned to the top of the Coping section. This will help you to stay safe, explain what kitchen items you need to replace & which you don't. 

weebl Apprentice
weebl
Posted
  • Author

Thanks. Anxiously awaiting my appointment now. 

squirmingitch Veteran
squirmingitch
Posted
On 11/21/2018 at 6:50 PM, weebl said:

Lastly, once my appointment is done, do I go gluten-free again at that point or should I wait for the biopsy? Assuming of course the blood work didn't come back positive, in which case the biopsy will be unnecessary. 

 

Sorry, I missed answering your last question there. Keep eating gluten until the biopsy is done. 

Hang in there!

  • 4 years later...
Jacki Espo Rookie
Jacki Espo
Posted

Can anyone share a source that you must be eating gluten for the skin punch biopsy to be useful? My derm disagreed with me.  Did the biopsy and of course it came back negative bc I have been gluten free since Dec. 

Can anyone direct me to a source? Thanks.

trents Grand Master
trents
Posted

It's just logical. DH is the epidermal expression of celiac disease. No gluten, no inflammation and so no antibodies.

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

Celiac.com Sponsor (A8-M):


Wheatwacked Veteran
Wheatwacked
Posted

A skin biopsy is the first step in diagnosing DH. Direct immunofluorescence of clinically normal skin adjacent to a lesion shows granular IgA deposits in the upper dermis. Histology of lesional skin may show microabscesses containing neutrophils and eosinophils. However, histology may reveal only excoriation due to the intense itching that patients experience.  https://www.niddk.nih.gov/health-information/professionals/clinical-tools-patient-management/digestive-diseases/dermatitis-herpetiformis

The key here is the biopsy has to be adjacent to a lesion, not the lesion itself. Has your dermatologist diagnosed other cases of DH? In the end if GFD relieves the symptoms do you care what the doctors think?

Dermatitis Herpetiformis: An Update on Diagnosis and Management IgA deposits persist in the dermis for at least a few years after adherence to a GFD, so the DH diagnosis can be confirmed afterwards without returning to a normal gluten-containing diet if necessary.

Jacki Espo Rookie
Jacki Espo
Posted
3 hours ago, Wheatwacked said:

I couldn't agree more.  My body is not going near gluten ever again. The only reason I'm on this search at this stage is to ensure it's not something else happening that I'm missing in my body.  My dermatologist did take skin adjacent to a lesion but he was adamant and I did not need to be eating gluten for the test to be accurate. 

15 hours ago, trents said:

It's just logical. DH is the epidermal expression of celiac disease. No gluten, no inflammation and so no antibodies.

 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,272
    • Most Online (within 30 mins)
      7,748
    kellie2025
    Newest Member
    kellie2025
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • RMJ
      Kan-101

      By RMJ · Posted

      It is more likely code for “we think there really was a good response to the treatment, but it was small or in a small percent of subjects so it would take a large clinical trial to try to prove it.”
    • Dana0207
      Celiac symptoms

      By Dana0207 · Posted

      Thank you so much for your replies. Luckily the rash went away when I completely swore off gluten. It took several months but I have not had a flare in months. So a biopsy is no longer possible. The itch was terrible and apart from bleaching my skin the steroid lotions and potions did nothing. The Gliadin is for accidents and shall be a part of my travel kit from now on. This past exposure has made a me a little leery about eating anything that was not cooked in my kitchen or a dedicated gluten-free restaurant. As much as I used to love baked goods, I am cured and have become quite the gluten free baker to the point that friends and family forget that my cakes/cookies/and bread are not "real". I guess I will have to wait for the new blood test to come out to get confirmation but I have a suspicion that the rash was dermatitis herpetiformis.
    • Jmartes71
      Nateral remedies

      By Jmartes71 · Posted

      Hello, I just wanted to share with the frustration of skin issues and seeing dermatologist and medications not working for years, I did my own healing experiment. As of last week I have been taking a drop internally under the tongue of Vetiver and putting on topically on sores Yellow/Pom.I am seeing a extreme difference at a rapid time.Im also noticing my nails a little harder. Ive always been into natural properties because I feel its safer for the body.I know short time, but really seeing a difference. I also feel the the trapped gases that causes bloating helps break down as well.Curious if any body else can benefit from and has tried. Products is made by Doterra by Dr Hill
    • Scott Adams
      Is Caputo gluten free flour really free of gluten?

      By Scott Adams · Posted

      We have a category of articles on this topic if you really want to dive into it: https://www.celiac.com/celiac-disease/miscellaneous-information-on-celiac-disease/gluten-free-diet-celiac-disease-amp-codex-alimentarius-wheat-starch/
    • Scott Adams
      Celiac symptoms

      By Scott Adams · Posted

      I agree with @trents, and the rash you described, especially its location and resistance to steroids, sounds highly characteristic of dermatitis herpetiformis, which is the skin manifestation of celiac disease. The severe and prolonged reaction you're describing five days after a small exposure is, while extreme, not unheard of for those with a high sensitivity; the systemic inflammatory response can absolutely last for several days or even weeks, explaining why you still don't feel right. Your plan to avoid a formal gluten challenge is completely understandable given the severity of your reactions, and many choose the same path for their well-being. While experiences with GliadinX (they are a sponsor here) are mixed, some people do report a reduction in the severity of their symptoms when taken with accidental gluten, though it is crucial to remember it is not a cure or a license to eat gluten and its effectiveness can vary from person to person. For now, the absolute best advice is to continue being hyper-vigilant about cross-contamination—buffets are notoriously high-risk, even with good intentions. Connecting with a gastroenterologist and a dermatologist who specialize in celiac disease is essential for navigating diagnosis and management moving forward. Wishing you a swift recovery from this last exposure. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
×
×
  • Create New...