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

HELP -Biopsy Results


ejk

Recommended Posts

ejk Rookie

Hi All.

I just got back from the dermatologists office. Got the stitches removed from the two punch biopsy sites I had done a couple of weeks ago. The dermo says it did not show up as DH, but something called Lichen Simplex Chronicus. So I came home and Googled that condition. First, my "lesions" don't look anything like the photos I found of LSC; they look far more like DH photos I've seen. Second, LSC doesn't seem to appear bilaterally on the body; my lesions always have a counterpart (a mirror image on the other side of my body). Like clockwork - if I get a bump/sore on my right butt cheek, in a day or two I get one in almost the exact same place on the other side. Same with bumps on my legs and shoulders.

Is there a chance that the DH is being misdiagnosed as LSC? It's not like I WANT to have DH, but I'd like to be confident in the diagnosis. The dermo just suggested using Free and Clear laundry detergent (I already do) and keeping my skin moisturized with something like Vanicream (which I already do). 

This has been going on for two years for me, and I'm starting to get really frustrated.

I'd like to hear your thoughts...

Thanks!


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



Celiac.com Sponsor (A8-M):



squirmingitch Veteran

It's possible it's being misdiagnosed. The big question is..... had you been continually eating gluten up until the time the biopsies were taken? Also, were you scratching the places where the biopsies were taken from prior to the biopsies?

 

I googled LSC & did not find anything that says it presents bilaterally. I did note that dh is listed as a differential dx of LSC but many other skin conditions are also.

Open Original Shared Link

ejk Rookie
20 hours ago, squirmingitch said:

It's possible it's being misdiagnosed. The big question is..... had you been continually eating gluten up until the time the biopsies were taken? Also, were you scratching the places where the biopsies were taken from prior to the biopsies?

 

I googled LSC & did not find anything that says it presents bilaterally. I did note that dh is listed as a differential dx of LSC but many other skin conditions are also.

Open Original Shared Link

Thank you for your response! Yes, I had been eating gluten - maybe just not enough every day. The two biopsies she took:  One was directly on a lesion, but I kept insisting that DH biopsies had to be peri-lesional. She just said, "not necessarily," and then took another one right next to the one on the lesion. This skin had been previously damaged by prior lesions so was not fully intact skin. I wanted her to take one from somewhere that had skin that had not been previously damaged.

I guess I just don't have confidence in how she did the biopsies. I think I'll wait awhile and then find another dermo and get a second opinion.

Thanks for the article. I am going to read it now.

squirmingitch Veteran

A gluten cracker or slice of bread per day should be enough to keep the antibodies active. If she said "not necessarily" then she has it wrong. I agree, find another derm to do the biopsy correctly. Take someone with you for the next one so they can watch. Seems like terms like to take biopsies on your back or other places where you, the patient, can not see what they're doing. The pattern the lab is looking for it extremely easily destroyed either by scratching or by the rash itself destroying the pattern in that immediate area. This is why the only good biopsy is taken on clear skin adjacent to a fresh lesion. 

Be advised that the celiac serum panel is negative 60% of the time for those of us with dh so you can't count on the celiac blood tests necessarily.

Let us know what happens please and good luck.

JaneWhoLovesRain Enthusiast

Hi - when I first saw the dermatologist for my rash he quickly looked at and said I had LSC.  I never  heard of this so went home and googled it and was rather insulted to read that it is very common among those in nursing homes and psychiatric hospitals.  And like you the description and pictures did not match what I had. (next visit I was diagnosed with psoriasis/eczema, then scabies, then after a biopsy of the lesion itself :( some strange disorder that hits 1 in 10,000 people, finally GI doctor said DH),

I just did another search on LSC and see that it is caused by chronic itching so it is very possible you (as well as many others here) could have this simply because DH is one of the itchiest skin diseases there is.  So yes, you could have LSC but the underlying issue your doctor is missing is what is causing the itch that causes you to scratch so much that it is turning skin into a leathery mess.

I just found the below picture of LSC that looks very much like my dh looked but the other pictures on the same web site look nothing like this so maybe this person has dh as well as lsc. 

Lichen%20simplex%20chronicus27.webp

 

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,246
    • Most Online (within 30 mins)
      7,748

    Kathleen weber
    Newest Member
    Kathleen weber
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      @Zuma888, The antibodies produced in response to gluten are made in the intestines.  When the body is provoked sufficiently, the antibodies overflow out of the intestines and into the blood stream.  Once in the blood stream, the antibodies can be measured with tTg IgA tests.  Three grams of gluten per day for two weeks minimum is enough gluten to make you feel the symptoms of having been glutened, but the antibodies are not in sufficient quantity to be measured in the blood. Ten grams of gluten per day for a minimum of two weeks is required to get the anti gluten antibodies at a high enough level in the blood stream to be measured by tTg IgA tests. So, no, occasional cross contamination or (heaven forbid) intentional cheat days will not be sufficient for tTg IgA testing.  You will still be making antibodies which will still be causing inflammation and damage to the intestines and body.  Histamine is released as part of the immune response to gluten.  High histamine levels lead to food sensitivities, brain fog, and body aches.   The damage done to the gastrointestinal tract affects the absorption of essential vitamins and minerals.  Malabsorption of fats can cause changes in stools.  Insufficient absorption of vitamins and minerals can cause damage to other organs like the thyroid if it can't get enough Selenium, iodine, iron, zinc, and Thiamine.  Brain fog and fatigue can be caused by low Thiamine and other B Complex vitamins.  Vitamin D is needed to regulate the immune system.  One gene is all that's needed to develop Celiac disease.  I know a Celiac diagnosis is a change that can be difficult to get your head around.  Many people go through the five stages of grief.  One stage is "bargaining".  Sounds like you're stuck there.  Every little cheat counts to your detriment.  But sticking to a gluten free diet, makes every meal a success.   Read the comments below the article... Best wishes!  Keep us posted on your progress!
    • Scott Adams
      No, I would not say this at all. If you were diagnosed with celiac disease and were gluten-free for a while, you could have gone into remission. Everyone's body is different, and some celiacs may be able to get regular contamination and not end up with damaged villi and positive antibody tests, while others who ingest tiny amounts will relapse and have full blown symptoms and flattened villi.  Only a full gluten challenge would reveal where you are at this point. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      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.      
    • Pablohoyasaxa
      Great  post. The skin issue can be intolerable. I have been taking niacinamide for the past month and have improved with respect to the blistering lesions. 
    • knitty kitty
      I've found taking Niacin Vitamin B 3 in the form that causes flushing (nicotinic acid) helps immensely to clear my skin.  The flushing is harmless and goes away the longer Niacin is taken.  The flushing (vasodilation in the skin) helps the body get rid of the tTg 3 IgA antibodies that cause the blisters.  TTg 2 IgA antibodies are found in the blood and are measured in diagnostic testing for Celiac.  People with Dermatitis Herpetiformis make tTg 3 as well as tTg 2 antibodies.  Niacin Vitamin B3 in the non flushing form niacinamide also works without the flushing, but takes a bit longer.   I also avoid foods containing high levels of iodine because iodine activates the tTg 3 IgA antibodies to become more active and make more blisters.  I avoid kelp (nori, seaweed) and crustaceans,  eggs, dairy products, and iodized table salt.   Niacinamide and Nicotinic acid are water soluble and harmless.  I'd much rather take Niacin than Dapsone with scary side effects.  
×
×
  • Create New...