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

Recommended Posts

krisb Contributor

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
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

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
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

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

Michi8 Contributor
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

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
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
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
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.

  • 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. - Jordan Carlson posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Fruits & Veggies

    2. - wellthatsfun posted a topic in Gluten-Free Recipes & Cooking Tips
      0

      heaps of hope!

    3. - knitty kitty replied to mamaof7's topic in Parents, Friends and Loved Ones of Celiacs
      6

      Help understand results

    4. - knitty kitty replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      10

      Insomnia help

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,994
    • Most Online (within 30 mins)
      7,748

    KimberlyS
    Newest Member
    KimberlyS
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Jordan Carlson
      Hello everyone! Been a while since I posted. The past few moths have been the best by for recovery for myself. I have been the least bloated I have ever been, my constant throat clearing is almost gone, I have stopped almost all medication I was prevously taking (was taking vyvanse for adhd, pristiq for anxiety,fomotadine/blexten for histamine blockers and singulair). Only thing I take now is Tecta. I also no longer get any rashes after eating. Things are going very well. Most success came actually once I upped my B12 daily dose to 5,000 mcg. I do have one thing I am un able to figure out and want to see if anyone else has this issue or has experience working around it. Ever since I was born I have always had a issue getting fruits and veggies down. No matter how hard I tried, it would always result in gagging or throwing up. Always just thought I was a picky eater. Now that my stomach and system has healed enough that I can feel when something is off almost istantly, I notice that after eating most fruits (sometimes I am ok with bananas) and veggies, my stomach instantly starts burning and my heart starts to pound and I get really anxious as if my body doesnt know what to do with what just enetered it. So I am thinking now that this is what probably was going on when I was born and my body started rejecting it before which caused this weird sensory issue with it causing the gagging. Hoping someone has some exprience with this as well because I would love to be able to enjoy a nice fruit smoothie once in a while haha. Thanks everyone!
    • wellthatsfun
      i know i've been rather cynical and sad about being fully diagnosed in june 2025, but my boyfriend has been consistently showing me the wonderful world that is gluten free cooking and baking. in the past couple of days he's made me a gluten free rice paper-wrapped spanakopita "pastry", plus a wonderful mac and cheese bechamel-ish sauce with gluten free pasta (san remo brand if you're in australia/if you can get your hands on it wherever you are).  those meals are notably gluten free, but mainly he's been making me easy gluten free meals - chili mince with white rice and sour cream, chicken soup with homemade stock from the chicken remains, and roast chickens with rice flour gravy and roast veggies. i'm a bit too thankful and grateful lol. how lucky could i possibly be? and, of course, for those who don't have someone to cook for them, it's quite easy to learn to cook for yourself. i've been making a lot of meals for us too. honestly, cooking is pretty darn fun! knowing basic knife skills and sanitary practices are all you really need. experimenting with spices will help you get on track to creating some really flavourful and yummy dishes. coeliac is a pain, but you can use it to your advantage. healthier eating and having fun in the kitchen are major upsides. much luck to all of you! let's be healthy!
    • knitty kitty
      That test is saying that your daughter is not making normal amounts of any IGA antibodies.  She's not making normal amounts of antibodies against gliadin, not against bacteria, not against viruses.  She is deficient in total IGA, so the test for antigliadin antibodies is not valid.  The test was a failure.  The test only works if all different kinds of antibodies were being made.  Your daughter is not making all different kinds of antibodies, so the test results are moot.  Your daughter should have the DGP IgG and TTG IgG tests done.   The tests should be performed while she is still consuming gluten.  Stopping and restarting a gluten containing diet can make her more sick, just like you refuse to eat gluten for testing.  Call the doctor's office, request both the IGG tests. Request to be put on the cancellation list for an appointment sooner.  Ask for genetic testing.   Celiac disease is passed on from parents to children.  You and all seven children should be tested for genes for Celiac disease.  Your parents, your siblings and their children should be tested as well.  Eating gluten is not required for genetic testing because your genes don't change.  Genetic testing is not a diagnosis of Celiac disease.  Just having the genes means there is the potential of developing Celiac disease if the Celiac genes are activated.  Genetic testing helps us decide if the Celiac genes are activated when coupled with physical symptoms, antibody testing, and biopsy examination. It's frustrating when doctors get it wrong and we suffer for it.  Hang in there.  You're a good mom for pursuing this!  
    • knitty kitty
      @hjayne19, So glad you found the information helpful.  I know how difficult my struggle with anxiety has been.  I've been finding things that helped me and sharing that with others makes my journey worthwhile. I like Life Extension Bioactive Complete B Complex.  It contains the easily activated forms of B vitamins needed by people with the MTHFR genetic variation often found with Celiac disease.   Avoid B Complex vitamins if they contain Thiamine Mononitrate if possible.  (Read the ingredients listing.)  Thiamine Mononitrate is the "shelf-stable" form of B 1 that the body can't utilize.  B vitamins breakdown when exposed to heat and light, and over time.  So "shelf-stable" forms won't breakdown sitting on a shelf in a bright store waiting to be bought.  (It's also very cheap.)  Thiamine Mononitrate is so shelf-stable that the body only absorbs about thirty percent of it, and less than that is utilized.  It takes thiamine already in the body to turn Thiamine Mononitrate into an active form.   I take MegaBenfotiamine by Life Extension.  Benfotiamine has been shown to promote intestinal healing, neuropathy, brain function, glycemic control, and athletic performance.   I take TTFD-B1 Max by Maxlife Naturals, Ecological Formulas Allthiamine (TTFD), or Thiamax by EO Nutrition.  Thiamine Tetrahydrofurfuryl Disulfide (TTFD for short) gets into the brain and makes a huge difference with the anxiety and getting the brain off the hamster wheel.  Especially when taken with Magnesium Threonate.   Any form of Thiamine needs Magnesium to make life sustaining enzymes and energy.  I like NeuroMag by Life Extension.  It contains Magnesium Threonate, a form of magnesium that easily crosses the blood brain barrier.  My brain felt like it gave a huge sigh of relief and relaxed when I started taking this and still makes a difference daily.   Other brands of supplements i like are Now Foods, Amazing Formulas, Doctor's Best, Nature's Way, Best Naturals, Thorne, EO Nutrition. Naturewise.  But I do read the ingredients labels all the time just to be sure they are gluten and dairy free. Glad to help with further questions.  
    • trents
      Welcome to the celiac.com community @pothosqueen!   Can you be more specific about which IGA test was run that resulted in 114 score and said to be "normal" and could you please include the reference range for what would be normal? By the size of that number it looks like it may have been what we call "total IGA" but that test is not usually run without also running a TTG-IGA. Total IGA tests for IGA deficiency. If someone is IGA deficient, then the celiac-specific IGA tests like the TTG-IGA will be inaccurate. Was this the only IGA test that was run? To answer, your question, yes, a positive biopsy is normally definitive for celiac disease but there are some other medical conditions, some medications and even some food proteins in rare cases that can cause positive biopsies. But it is pretty unlikely that it is due to anything other than 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.