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

When To Do A Skin Biopsy

krisb

By krisb
in Dermatitis Herpetiformis

Recommended Posts

krisb Contributor
krisb
Posted

Since I've been gluten free a year ago the blisters on my elbows have been perfect unless I go out to eat and don't question the food. I never had a biopsy but I might in the future. Anyway, I went to Friendly's to eat the other day and my elbows are raging and I have blisters all in my mouth. I didn't question what I ate because I am pregnant and was starving. I'm assuming that the sauces on my chicken had gluten. Should I go and have it biopsied while it's inflamed? Or maybe I should just wait until I'm done being prego. Either way i know gluten does this to me but it would be good to know if it was DH. How long after a breakout can you do a biopsy? I figure that by time I get an appointment to do it my elbows will be better.

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

Celiac.com Sponsor (A8-M):


Michi8 Contributor
Michi8
Posted
Since I've been gluten free a year ago the blisters on my elbows have been perfect unless I go out to eat and don't question the food. I never had a biopsy but I might in the future. Anyway, I went to Friendly's to eat the other day and my elbows are raging and I have blisters all in my mouth. I didn't question what I ate because I am pregnant and was starving. I'm assuming that the sauces on my chicken had gluten. Should I go and have it biopsied while it's inflamed? Or maybe I should just wait until I'm done being prego. Either way i know gluten does this to me but it would be good to know if it was DH. How long after a breakout can you do a biopsy? I figure that by time I get an appointment to do it my elbows will be better.

I believe a biopsy can be done at any point (regardless if a lesion is active or not.) The key is that the tissue is taken from the normal skin beside the lesion, not the lesion itself.

In terms of biopsing during pregnancy, that is up to you. However, I believe you should be vigilant about staying 100% gluten free to ensure you have a healthy pregnancy and birth.

Michelle

Guest Educator
Guest Educator
Posted

My drmatologist said the biopsy has to be done on a blister that has not yet opened to get accurate results, otherwise the test will return non-conslusive or maybe as a false negative. I say get it ithere as soon as you can. Being pregnant doesn't matter. The biopsy is a simple slice of the effected area where the non bursted blister is. Good luck and best wishes. Kris

My drmatologist said the biopsy has to be done on a blister that has not yet opened to get accurate results, otherwise the test will return non-conslusive or maybe as a false negative. I say get it ithere as soon as you can. Being pregnant doesn't matter. The biopsy is a simple slice of the effected area where the non bursted blister is. Good luck and best wishes. Kris

Michi8 Contributor
Michi8
Posted
My drmatologist said the biopsy has to be done on a blister that has not yet opened to get accurate results, otherwise the test will return non-conslusive or maybe as a false negative. I say get it ithere as soon as you can. Being pregnant doesn't matter. The biopsy is a simple slice of the effected area where the non bursted blister is. Good luck and best wishes. Kris

Is your dermatologist saying that the sample must be taken from the lesion or beside the lesion? If it is from the lesion, then he is incorrect... Peter H.R. Green, MD, Director of the Celiac Disease Center at Columbia University, wrote on the subject of skin biopsy for DH in his recent book.

From Celiac Disease: A Hidden Epidemic:

"The gold standard for diagnosis is a skin biopsy of uninvolved skin adjacent to an eruption -- best taken within millimeteres of a lesion. The biopsy must be done by a knowledgeable dermatologist because a sampling of tissue from the eruption itself can be confused with other skin conditions. A biopsy of the actual lesion will give a characteristic appearance, but it is not possible to do the immunological staining that is necessary to make the diagnosis. This is because the inflammatory reaction in the blistering lesion destroys the early signs of the immune deposits that are still present in adjacent tissue."

I believe not all (or many?) dermatologists are familiar enough with Celiac and DH to test properly, and some will even insist that the biopsy must be of the actual lesion. Perhaps that is standard when testing for other health issues, but as mentioned in the above quote, testing for DH in this manner gives inaccurate results.

Michelle

krisb Contributor
krisb
Posted
  • Author

How do you find a good dermatologist that knows how to do it right?

Michi8 Contributor
Michi8
Posted
How do you find a good dermatologist that knows how to do it right?

I'd ask here to see if anyone has recommendations of drs in your area. I can't give you my dermatologist's name, because he did the biopsy wrong (and got a negative result of course!) :angry:

Michelle

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

Does anyone know why UNINVOLVED, apparently healthy skin should be biopsied? I know Peter Green is the reigning deity of celiac MD's, but he also says the gold standard of diagnosis is the intestinal biopsy, and I certainly don't agree with him there!

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

Celiac.com Sponsor (A8-M):


Michi8 Contributor
Michi8
Posted
Does anyone know why UNINVOLVED, apparently healthy skin should be biopsied? I know Peter Green is the reigning deity of celiac MD's, but he also says the gold standard of diagnosis is the intestinal biopsy, and I certainly don't agree with him there!

The reason was in the paragraph I quoted. :) Dr Green is not the only source of this information. Biopsy (skin & intestinal), for good or bad, is still considered to be the gold standard, and will be until other testing methods become standard. Personally, I put more faith in the word of a Dr who specializes in the study and treatment of celiac disease, than in a dermatologist who does not specialize in it.

Michelle

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted
The reason was in the paragraph I quoted. :) Dr Green is not the only source of this information. Biopsy (skin & intestinal), for good or bad, is still considered to be the gold standard, and will be until other testing methods become standard. Personally, I put more faith in the word of a Dr who specializes in the study and treatment of celiac disease, than in a dermatologist who does not specialize in it.

Michelle

Absolutely! Hmm, somehow I missed the paragraph of explanation. Serves me right for skimming, I suppose!

I'm just questioning it because I had what I'm reasonably sure was DH (it led to the blood test that showed my IgA off the charts), and when I went off gluten, the rash disappeared (as did the stomach problems that I had been ignoring to the point where I didn't realize I had any until they went away). My skin biopsy--taken from unblemished skin next to the lesions--was totally negative.

Dr. Green does not address the fact that most PCP's and even most dermatologists, will prescrible Prednisone to get rid of the rash way before they decide to biopsy to find the cause of it. I believe that Prednisone taken within a month or two (or maybe more?) of the biopsy screws up the test results.

I don't give a flying fig about gold standards: there is no good reason to biopsy the intestines if there is a positive response to the diet and no other problems. Intestinal biopsy is not only invasive, it is only useful if the MD happens to biopsy the right sites. Not all villi are affected at the same rate!

Michi8 Contributor
Michi8
Posted
Absolutely! Hmm, somehow I missed the paragraph of explanation. Serves me right for skimming, I suppose!

I'm just questioning it because I had what I'm reasonably sure was DH (it led to the blood test that showed my IgA off the charts), and when I went off gluten, the rash disappeared (as did the stomach problems that I had been ignoring to the point where I didn't realize I had any until they went away). My skin biopsy--taken from unblemished skin next to the lesions--was totally negative.

Dr. Green does not address the fact that most PCP's and even most dermatologists, will prescrible Prednisone to get rid of the rash way before they decide to biopsy to find the cause of it. I believe that Prednisone taken within a month or two (or maybe more?) of the biopsy screws up the test results.

Dr Green does go on to say, "No tests in medicine are 100 percent, not everyone with dermatitis herpetiformis will have a positive skin biopsy. A negative biopsy should not necessarily be used to exclude the diagnosis if the legions look and act like dermatitis herpetiformis and occur after the ingestion of gluten. Patients should be retested, making sure that both the lab technique and specimen taken are appropriate for determining the diagnosis."

Michelle

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. DebD5
      - DebD5 commented on Scott Adams's article in Spring 2026 Issue
      3

      The Dark Side of Gluten-Free: Counterfeit Labels and Global Food Safety Failures

      Interestingly enough, while I hear you. I completely disagree. Gluten has not been 100% removed. There’s still trace amounts under the regulated amount per millions allowed. I gave only figured out in the last year, while reading chats on this site, of other celiacs still having issues and how they figured it out. If enough companies allow slight amounts o...
    2. Scott Adams
      - Scott Adams commented on Scott Adams's article in Spring 2026 Issue
      3

      The Dark Side of Gluten-Free: Counterfeit Labels and Global Food Safety Failures

      I understand why that feels frustrating, because the labeling can definitely seem confusing. In the case of products like King Arthur’s gluten-free bread flour that contain gluten-free wheat starch, the wheat starch has been specially processed to remove the gluten proteins that trigger celiac disease. Because it originates from wheat, U.S. labeling laws s...
    3. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Doctors
      7

      Second chance

      I'm not sure why "colonoscopy" keeps coming up for you, again it would be an endoscopy to diagnose celiac disease, but it seems that Kaiser should still have your records. If you were diagnosed by them in the 1990's using a blood test and endoscopy, then you definitely have celiac disease, and hopefully you've been gluten-free since that time. You should...
    4. Russ H
      - Russ H replied to EssexMum's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Concerning GP advice

      This sounds like a GP who is ignorant regarding coeliac disease. The risk with consuming gluten for several days is that it triggers the coeliac immune response, leading to raised auto-antibodies and active disease for several months. People may not even be aware of symptoms during this process, but it is causing damage to the body. As trents has said, the...
    5. DebD5
      - DebD5 commented on Scott Adams's article in Spring 2026 Issue
      3

      The Dark Side of Gluten-Free: Counterfeit Labels and Global Food Safety Failures

      Exactly. What about King Arthur gluten free flour selling a gluten free bread flour containing “gluten free wheat starch” and says in allergens “contains wheat.” I don’t care if it contains a trace amount of wheat ok’ed by the food industry. For a celiac…100% gluten free and that’s all is acceptable. Hard alcohols and ciders and hard seltzers say gluten free...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,648
    • Most Online (within 30 mins)
      7,748
    anonymous54
    Newest Member
    anonymous54
    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

    • Scott Adams
      Second chance

      By Scott Adams · Posted

      I'm not sure why "colonoscopy" keeps coming up for you, again it would be an endoscopy to diagnose celiac disease, but it seems that Kaiser should still have your records. If you were diagnosed by them in the 1990's using a blood test and endoscopy, then you definitely have celiac disease, and hopefully you've been gluten-free since that time. You should be able to contact Kaiser for those records.
    • Russ H
      Concerning GP advice

      By Russ H · Posted

      This sounds like a GP who is ignorant regarding coeliac disease. The risk with consuming gluten for several days is that it triggers the coeliac immune response, leading to raised auto-antibodies and active disease for several months. People may not even be aware of symptoms during this process, but it is causing damage to the body. As trents has said, the gut lining normally recovers on a strict gluten-free diet, and this happens much faster in children than in adults.
    • Jmartes71
      Second chance

      By Jmartes71 · Posted

      Thats the thing, diagnosed in 1994 before foods eliminated celiac by biopsy colonoscopy at Kaiser in Santa Clara  now condo's but it has to be somewhere in medical land.1999 got married, moved, changed doctor's was with former for 25 years told him I waz celiac and that.Fast forward to last year.i googled celiac specialist and what popped up was a former well known heard of hospital. I thought I would get answers to be put through unnecessary colonoscopy KNOWING im glutenfree and she wasn't listening to me for help rather than screening me for celiac! Im already diagnosed seeking medical help.I did all the appointments ask from her and when I wanted my records se t to my pcp, thats when the with holding my records when I repeatedly messaged, it was down played the seriousness and I was labeled unruly when I asked why am I going through all this when its the celiac name that IS what my issue and All my ailments surrounding it related. I am dea6eoth the autoimmune part though my blood work is supposedly fabulous. Im sibo positive,HLA-DQ2 positive, dealing with skin, eye and now ms.I was employed as a bus driver making good money, I loved it for the few years my body let me do until I was yet again fired.i went to seek medical help because my body isn't well just to be made a disability chaser. Im exhausted,glutenfree, no lawyer will help and disability is in limbo thanks to the lax on my health from the fabulous none celiac Google bay area dr snd team. Its not right.
    • trents
      Concerning GP advice

      By trents · Posted

      Welcome to the celiac.com community @EssexMum! First, let me correct some misinformation you have been given. Except in the case of what is known as "refractory" celiac disease, which is very rare, it is not true that the "fingers" will not grow back once a consistently gluten free diet is adopted. Celiac disease is an autoimmune condition whereby the ingestion of gluten triggers an inflammatory process that damages the millions of tiny finger-like projections that make up the lining of the small bowel. We call this the "villous lining". Over time, continued ingestion of gluten on a regular basis results in the wearing down of these fingers which greatly reduces the surface area of this very important membrane. It is where essentially all the nutrition from what we eat is absorbed. So, losing this surface area results in inefficiency in nutrient absorption and often to medical problems related to nutrient deficiencies. Again, if a gluten-free diet is consistently observed, the villous lining of the small bowel should rebound. "We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesn't react to the gluten straight away, it will be a build up and then the pains start. " That sounds like unscientific BS to me. But it does sound like your stepdaughter may have a type of celiac disease we know as "silent" celiac disease, meaning, she is asymptomatic or at least the symptoms are not intense enough to usually notice. She is not completely asymptomatic, however, because you stated was experiencing tummy aches off and on. Cristiana gives some good suggestions about ordering "safe" food for your stepdaughter from restaurant menus in Europe. You must realize that as the step parent who only has her part of the time you have no real control over how cooperative her other set of parents are with regard to your stepdaughter's needs to eat gluten free. It sounds like they don't really understand the seriousness of the matter. This is very common in family settings where other members are ignorant about celiac disease and the damage it can do to body systems. So, they don't take it seriously. The best you can do is make suggestions. Perhaps print out some info about celiac disease from the Internet to send them. Being inconsistent with the gluten free diet keeps the inflammation smoldering and delays or inhibits healing of the villous lining. 
    • Scott Adams
      Gluten-Mimicking Proteins that can affect some Celiac individuals.

      By Scott Adams · Posted

      Here are some articles on cross-reactivity and celiac disease:      
×
×
  • 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.