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

  • 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. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Dermatitis Herpetiformis
      1

      Natural remedies

      While it's always important to approach internal use of essential oils with caution and ideally under the guidance of a qualified professional, your experience highlights the potential of complementary approaches when traditional medicine falls short. Many in the community are also interested in the intersection of natural wellness and gluten-free living...
    2. Scott Adams
      - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Gluten and short-term memory.

      It's interesting how a single, clear moment—like struggling during a game—can suddenly connect all the dots and reveal the hidden impact of gluten exposure. Your experience with short-term memory fog is a very real and documented symptom for many individuals with gluten sensitivity, often occurring alongside the other issues you mentioned like mood disturbances, sl...
    3. Scott Adams
      - Scott Adams replied to Suze046's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Reintroduction of Gluten

      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. What you're describing is a very common and frustrating experience when reintroducing gluten after a period of avoidance, and your timeline is perfectly c...
    4. Scott Adams
      - Scott Adams replied to Rejoicephd's topic in Coping with Celiac Disease
      2

      Draft gluten-free ciders… can they be trusted ?

      Your suspicion is almost certainly correct, and you are wise to be cautious. Draft cider is a very common and often overlooked source of cross-contact because the same tap lines are frequently used for both beer and cider; unless a bar has a dedicated line for gluten-free beverages, which is rare, the cider will run through tubing that has previously contained...
    5. Scott Adams
      - Scott Adams replied to Mykidzz3's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      High Cost of Gluten-Free Foods

      Your post really highlights the financial and emotional struggle so many families face. You are not alone in feeling frustrated by the high cost of gluten-free specialty items and the frustrating waste when your daughter can't tolerate them. A great place to start is by focusing on naturally gluten-free whole foods that are often more affordable and...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,369
    • Most Online (within 30 mins)
      7,748
    Nick H.
    Newest Member
    Nick H.
    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

    • Scott Adams
      Natural remedies

      By Scott Adams · Posted

      While it's always important to approach internal use of essential oils with caution and ideally under the guidance of a qualified professional, your experience highlights the potential of complementary approaches when traditional medicine falls short. Many in the community are also interested in the intersection of natural wellness and gluten-free living, particularly for managing systemic inflammation and its various symptoms, so sharing your story is valuable. Your observation that it may also be helping with bloating is fascinating, as that could point to an overall reduction in inflammation. Thank you for sharing what is working for you!
    • Scott Adams
      Gluten and short-term memory.

      By Scott Adams · Posted

      It's interesting how a single, clear moment—like struggling during a game—can suddenly connect all the dots and reveal the hidden impact of gluten exposure. Your experience with short-term memory fog is a very real and documented symptom for many individuals with gluten sensitivity, often occurring alongside the other issues you mentioned like mood disturbances, sleep disruption, and digestive irregularity. It's a frustrating and often invisible effect that can make you feel unlike yourself, so that moment of clarity, though born from a tough dominoes match, is actually a powerful piece of self-knowledge. Identifying a specific culprit like that steak strip is a huge win, as it arms you with the information needed to avoid similar pitfalls in the future and protect your cognitive clarity. You are definitely not alone in experiencing this particular set of neurological and physical symptoms; it's a strong reminder of gluten's profound impact on the entire body, not just the digestive system. Supplementation may help you as well.  The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
    • Scott Adams
      Reintroduction of Gluten

      By Scott Adams · Posted

      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. What you're describing is a very common and frustrating experience when reintroducing gluten after a period of avoidance, and your timeline is perfectly consistent with a non-celiac gluten sensitivity. While a celiac reaction can be more immediate, a sensitivity reaction is often delayed, sometimes taking several days to manifest as your body's inflammatory response builds up; the fact that your symptoms returned a few days after reintroduction is a strong indicator that gluten is indeed the culprit, not a coincidence. Your doctor's advice to reintroduce it was necessary to confirm the diagnosis, as the initial negative celiac test and subsequent improvement on a gluten-free diet pointed strongly towards sensitivity. Many in this community have gone through this exact same process of elimination and challenging, and it's wise to reintroduce gently as you did. Given your clear reaction, the best course of action is likely to resume a strict gluten-free diet, as managing a sensitivity is the primary way to control those debilitating symptoms and allow your body to heal fully.
    • Scott Adams
      Draft gluten-free ciders… can they be trusted ?

      By Scott Adams · Posted

      Your suspicion is almost certainly correct, and you are wise to be cautious. Draft cider is a very common and often overlooked source of cross-contact because the same tap lines are frequently used for both beer and cider; unless a bar has a dedicated line for gluten-free beverages, which is rare, the cider will run through tubing that has previously contained gluten-containing beer, contaminating your drink. The fact that you didn't react at a clean brewery suggests they may have had more meticulous practices or separate lines, but this is the exception, not the rule. Many in the community have had identical experiences, leading them to strictly avoid draft cider and opt for bottled or canned versions, which are poured directly from their sealed container and bypass the contaminated tap system entirely. Switching to bottles or cans is the safest strategy, and your plan to do so is a smart move to protect your health. PS - here are some articles on the topic:    
    • Scott Adams
      High Cost of Gluten-Free Foods

      By Scott Adams · Posted

      Your post really highlights the financial and emotional struggle so many families face. You are not alone in feeling frustrated by the high cost of gluten-free specialty items and the frustrating waste when your daughter can't tolerate them. A great place to start is by focusing on naturally gluten-free whole foods that are often more affordable and less processed, like rice, potatoes, beans, lentils, corn, eggs, and frozen fruits and vegetables—these are nutritional powerhouses that can form the basis of her meals. For the specialty items like bread and pasta, see if your local stores carry smaller, single-serving packages or allow returns if a product causes a reaction, as some companies understand this challenge. Regarding vitamins, that is an excellent next step; please ask her doctor to prescribe a high-quality gluten-free multivitamin, as insurance will often cover prescribed vitamins, making them much more affordable. Finally, connecting with a local celiac support group online can be a treasure trove of location-specific advice for finding the best and most affordable products in your area, saving you both time and money on the trial-and-error process. 
×
×
  • Create New...