Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Is My Biopsy Wrong?
0

8 posts in this topic

Hi friends, I have been in and out of this forum for a bit and now wanted to update you on the latest twist. After my skin biopsy, i have been gluten-free for nearly a year. After extremely extensive rash (scalp to soles) my skin is now nearly free of active lesions. Lots of the post-lesion marks though! 

We live in India but currently back home in Aus for various reasons for a couple of months. One of the main reasons was that there is a doctor here who specialises in DH right near my hometown. Before my appointment with him, I decided to have some tests done for routine check up. I wanted to have the kids tested for the coeliac genes and while I was there, I had mine done as well, just for fun. And we all came back negative. Yep, that's right. I have a positive DH biopsy, yet negative for the genes. 

So I take this to my DH expert (I really really like him and trust him a lot) who says I am a 'puzzle' but my skin actually looks a lot like lichen planus (anyone else with experience with this??). No mucosal changes though. So he says the only way I can be sure is a gluten challenge. Since I've never had the gut issues really (not that I can feel) I agreed. I have known since a baby I am gluten intolerant, so I'm expecting the usual headaches/fatigue but maybe worth it if I can rule out DH. I still have a lot to get my head around. I have spent a lot of time mentally adjusting to coeliac/DH and maybe all for nothing. Will keep you posted on the gluten challenge. He says it could take 4-6 weeks to get anything decent enough to biopsy, and if no rash comes I can assume it's lichen planus.

 

Any thoughts on this?

0

Share this post


Link to post
Share on other sites


Ads by Google:

Go for it . . . I've not had success with Dapsone or being gluten-free since October of 2012.  Had this horrible rash from head to my feet since February 27, 2012.  I know that date!  My sister was here for vacation and flew home the same day that I broke out.  

 

I just posted about my experience this morning.  Hey, if this isn't responding to gluten-free and Dapsone, let's find out what is going on in my body!

 

Good luck and wish you the best!

 

~ Lyn ~

0

Share this post


Link to post
Share on other sites

I hate to say it, but it is my opinion that there is no reason to go through the pain and suffering of a gluten trial for a new biopsy if you already had a positive one. The genetic test could actually be wrong. If they didn't do the right test, they wouldn't see the right parts of the genes, and it is now generally understood that there are almost certainly more than those two genes involved. There is no way that the science has entirely determined exactly every gene associated with celiac. And, if you are are going to continue with the challenge, just so you don't end up in the position again later don't stop at a skin biopsy. Go for broke and do both. There is no point walking through hell and only going halfway with the biopsies.

 

http://www.celiac.com/articles/21567/1/Ten-Facts-About-Celiac-Disease-Genetic-Testing/Page1.html

http://celiacdisease.about.com/od/diagnosingceliacdisease/a/Celiac-Disease-Genetic-Testing.htm

2

Share this post


Link to post
Share on other sites

Lyn is it possible that you could have lichens planus??

 

Adalaide I've not heard of gene tests being inaccurate. Have you heard of cases like this? I'm into day 3 now and still doing ok...

0

Share this post


Link to post
Share on other sites

I wouldn't risk eating gluten if it meant a possibility that the DH would come back. If eating gluten-free cleared up your rash, what difference does it make? No matter if it was true DH or something else, it cleared up, right? And you said you had headaches and fatigue that cleared up too. So, maybe it's NCGI, but either way, you know gluten gives you problems. I'd stick to a gluten-free diet for life.

1

Share this post


Link to post
Share on other sites




Thankks Bartfull, but I guess I'm looking at it from the other side. What if it's a chance I don't have DH? I think it's worth it, given that it's such a huge, life long change. Lichen Planus clears up by itself after running its course, so it was not necessarily eating gluten-free that cleared my rash. I will always be eating low gluten regardless because I have had issues since infancy. But there is a big difference in terms of vigilance and lifestyle changes between being intolerant and having coeliacs. 

0

Share this post


Link to post
Share on other sites

Lyn is it possible that you could have lichens planus??

 

Adalaide I've not heard of gene tests being inaccurate. Have you heard of cases like this? I'm into day 3 now and still doing ok...

 

That first link I provided explains how a genetic test can miss even a DQ2 or 8 gene. The second explains that there is an additional gene involved, DQ7 which is more fully explained in that link. And yes, I have heard of people who are biopsy diagnosed who are then genetically tested and lacking a DQ2 or 8 and then getting a doctor all pissy at them and trying to rescind a diagnosis even though the biopsy was positive and they responded well to the gluten free diet. It isn't like we've exactly mapped the entire human genome... moron doctors.

0

Share this post


Link to post
Share on other sites

Hi friends, I have been in and out of this forum for a bit and now wanted to update you on the latest twist. After my skin biopsy, i have been gluten-free for nearly a year. After extremely extensive rash (scalp to soles) my skin is now nearly free of active lesions. Lots of the post-lesion marks though! 

We live in India but currently back home in Aus for various reasons for a couple of months. One of the main reasons was that there is a doctor here who specialises in DH right near my hometown. Before my appointment with him, I decided to have some tests done for routine check up. I wanted to have the kids tested for the coeliac genes and while I was there, I had mine done as well, just for fun. And we all came back negative. Yep, that's right. I have a positive DH biopsy, yet negative for the genes. 

So I take this to my DH expert (I really really like him and trust him a lot) who says I am a 'puzzle' but my skin actually looks a lot like lichen planus (anyone else with experience with this??). No mucosal changes though. So he says the only way I can be sure is a gluten challenge. Since I've never had the gut issues really (not that I can feel) I agreed. I have known since a baby I am gluten intolerant, so I'm expecting the usual headaches/fatigue but maybe worth it if I can rule out DH. I still have a lot to get my head around. I have spent a lot of time mentally adjusting to coeliac/DH and maybe all for nothing. Will keep you posted on the gluten challenge. He says it could take 4-6 weeks to get anything decent enough to biopsy, and if no rash comes I can assume it's lichen planus.

 

Any thoughts on this?

I had a similar experience  I had a lichen planus diagnosis, too but tested negatively for DH.  (Not convinced the dr. did the biopsy correctly, however.) A few years earlier, I had a related condition that resulted in a few patches of permanent hair loss. Yet, I was covered with DH so I eliminated gluten and the DH sores went away.  The dr. couldn't explain the discrepancy but said since elimiInating gluten made the rash go away, I should stick with it.  I don't really mind being gluten free anyway.  Seems like people around me mind it more than I do! Oh, I also have another autoimmune condition, Hashimoto's Disease (thyroid). 

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,354
    • Total Posts
      920,511
  • Topics

  • Posts

    • Welcome!   You were smart to think about cross contamination.  Although it is great that there are so many gluten-free options out there, in the beginning it is best to try a whole foods diet, until your son feels a bit better.  The learning curve for the gluten-free diet is steep.  It is better for you to get everything down before letting others feed him.   When I was diagnosed, my hubby had been gluten free for 12 years.  I thought I knew the drill and converted right over to those gluten-free goodies I baked him.  Turned out, like many of us, I had some food inolerances not related to gluten but as a result of gut damage.  So, additives like Xantham gum made me think I was getting glutened, but I was not.  So, again, try to stick to naturally gluten free foods that are less processed for a while.  When you do venture out, I use "find me gluten free" and read the reviews from celiacs (not a person who thinks gluten-free is a way to lose weight! )   Here are some great tips from out Newbie 101 thread:  
    • I have the same problem. Was told it was psoriasis but no treatments worked even injections. I was daignosed celiac in may, and noticed a year ago the palm of my hand would itch intensely then get small blisters. I believe they are both dh. Have been gluten-free since diagnosis but still have issues with both areas. Thankful digestive issues cleared but would love to know how long before they clear up? I hope we both get feed back and best wishes to you!
    • Yes it most certainly could be a false negative, and I would bet you a dozen donuts that it is (gluten free, of course.   )  At the very least you can be sure it is related to gluten.  These gluten rashes take forever to clear up.  I don't know about you, but whenever I start to doubt my gluten intolerance, I just look at my skin, and the old blood stains on my sheets, and I am reassured that it's not all in my head, and I need to avoid gluten as if it were a bucket of battery acid.
    • Hello, My fiance and I are going to Singapore for our honeymoon next year and I was wondering if anyone knew any cafes/restaurants etc that have gluten-free dishes? We previously went two years ago and enjoyed ourselves so much that we definitely wanted to go back our our honeymoon. Catch is I got diagnosed as being gluten intolerant a few months ago, negative for Coeliac though. If I eat gluten I have bad nausea, bloating, diarrhea etc. Not pretty for a honeymoon :-) I am more than happy to eat fruit at breakfast and make do with steamed rice at dinner etc but if anyone has any ideas on anywhere I can safely eat that would be much appreciated. I don't care how much it costs! Also is it possible for me to bring packaged gluten-free food into Singapore from Australia? I am not sure on the rules. Thank you!!
    • Went in and talked to the manager of our pm and asked about the gluten free pizza, and he told me he can't guarantee its 100% gluten free because of the flour in the air from the other crusts being made.  I value the honesty.   The other employee also mentioned changing gloves.   I was thinking wow great, until I walked out and got to thinking about cross contamination from everyone grabbing the toppings out of the same bins and spreading the sauce with the same utensils.    My son was just diagnosed this week so we are new to the whole lifestyle.   So any help or info is greatly appreciated.    Thanks  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,423
    • Most Online
      1,763

    Newest Member
    Kimmieellis
    Joined