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

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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,274
    • Most Online (within 30 mins)
      7,748
    nanajan1993
    Newest Member
    nanajan1993
    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...