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
      127,659
    • Most Online (within 30 mins)
      7,748
    Amanda chef
    Newest Member
    Amanda chef
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.3k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Still testing positive after being gluten free for one year ?!!

      By Scott Adams · Posted

      For people with celiac disease hidden gluten in their diets is the main cause of elevated Tissue Transglutaminase IgA Antibodies (tTG-IgA), but there are other conditions, including cow's milk/casein intolerance, that can also cause this, and here is an article about the other possible causes:    
    • Scott Adams
      Not sure if this is Celiac or just a gluten-free intolerance

      By Scott Adams · Posted

      Considering how ill your daughter seems to get from eating gluten you may want to weigh the importance of an official celiac disease diagnosis against the potential health issues she would need to endure to get a formal diagnsis. 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.
    • trents
      I am having a very hard time with foods calling themselves "Gluten Free" but in reading ingredients are not safe, cross contamination

      By trents · Posted

      Welcome to the forum, @Mary Miller A! May I ask, you say you are new to this online community but how long ago were you diagnosed as having celiac disease? You seem to have a good awareness of cross contamination issues but have you considered cross reactivity issues? Some of your cross contamination concerns should be addressed by FDA disclosure regulations having been put in place in recent years that require disclosure of the source of ingredients such as "modified food starch" and "natural flavorings" when they are made from any of the nine FDA recognized major allergens, wheat being one of the nine.  
    • Tracey Thomas
      New and Frustrated

      By Tracey Thomas · Posted

      So I’m back. Sorry for delay this has been a very expensive exhausting experience that I feel is still not resolved. So the reason for the B-12 issue is. Doctor tested me for alpha gal my test came back positive but numbers weren’t high enough for doctors. Meaning allergist., family doctor to think I should be having this kind of reaction. So there for the B-12 vitamins I was taking was a gummie form. So st this time thinking it’s the alpha gal I had to stop everything that was gelatin, anything that couldn’t swim or fly. The ingredients in things. So I’ve done this I’ve cleaned my system and things were getting better. I’m still scared from the hives that broke out all over the upper part of my body from trunk up. Scaring is on stomach and back area in some places. So any how I had allergy test done doctor said I wasn’t allergic to wheat that I was fine to eat gluten. So I still avoided gluten just to make sure. Well around Christmas I thought maybe I could try a little dessert so I did and I could tell over time it was making me tired but it was so good. So time went on and I tried natures own butter bread as toast with my eggs. That was ok couldn’t really tell anything so I thought darn I might be ok. So I’m eating regular instant oatmeal packs the cinnamon spice. Soon as I finished it my stomach was killing me. The day before I had the same thing but didn’t notice this like this time I ate it. But I did notice a burning itchy area on my left shoulder like collar bone area. Well it’s still there . So it’s same kind of spot that I broke out in prior at the beginning of all this. Now I’m confused my test for celiac which was blood test was negative. My allergist told me he believed I had a major health problem going on that could either be a form of cancer, rheumatoid arthritis, or my hypothyroidism was messed up. So had blood test done for rheumatoid arthritis that came back negative. My thyroid numbers were good I’m on levothyroxine for that. And nothing else was done so left it at alpha gal. Could this still be celiac. 
    • Mary Miller A
      I am having a very hard time with foods calling themselves "Gluten Free" but in reading ingredients are not safe, cross contamination

      By Mary Miller A · Posted

      I am new here.  I am really totally frustrated by trying to be as gluten free as possible, only to find out that products being called "gluten free" have serious ingredients that need clarification (like Methocellulose) which can be derived from wheat shafts, "yeast extract" which can be grown on wheat, rye or barley, and issues with companies that claim they are making "wheat free bread in a facility that can cross contaminate because they mostly make wheat bread.  I remember about a month ago reading from the Celiac's Foundation a paper regarding how it is virtually impossible to be "gluten free" (https://celiac.org/gluten-impossible-to-avoid-for-most-people-study-shows/).  And here I am again, with a basketball sized stomach (even when laying down), and frustrated beyond belief.  How do we do this? How do we fix this?  Is it even possible, to fix our diet to be without any possible small grain of gluten in our system?  It's hard emotionally, (not to mention physically;  the gassiness, the bloating, and certainly back door incontinence, as well as gastric problems and lack of nutrition, etc.  How do we fare when we don't even have doctors to advice us in small communities where "celiac's doesn't exist."  I am tired.  Anyone else?
×
×
  • Create New...