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

Why Do A Biopsy?
0

7 posts in this topic

Hi all - I'm new to the forum. We just received my 5 year old daughter's lab work yesterday and she tested positive for the transglutaminase antibodies, IGA - it was very high (54 with a negative value being less than 8). The gliadin AB was also positive. Given that she's also symptomatic, this seems to me to be enough confirmation that she has celiac disease and we are eliminating gluten from her diet (and eventually the family's - but I'm undergoing testing too so can't go gluten-free yet).

I have a connective tissue disease that has a fairly high correlation with celiac disease (about 16% of people with Sjogren's have celiac disease) and I also have symptoms, so I know there's a family history of autoimmune disease, and one that frequently co-occurs with celiac disease. I was diagnosed with Sjogren's based on positive lab work, but like celiac disease, the gold-standard for diagnosis is a positive salivary gland biopsy. Given the extremely high levels of antibodies I have and my numerous extraglandular symptoms, I would never agree to a lip biopsy, so I am wondering why the need for a small bowel biopsy if a patient has positive blood work and is symptomatic?

Since Sjogren's is a systemic disease, I am on medication for the rest of my life. I guess my main concern is if there is ever a medical treatment for celiac disease, she may be denied access to it because she *only* had the blood work and symptoms...

The lab work was ordered by a pediatric rheumatologist (her ANA was also positive but I'm praying that's just because mine is always sky high and not because she has another autoimmune disease) and we can't get in to see a pediatric gastroenterologist until late June... that's too long for me to have to wait feeling 99.99% sure I can help my daughter feel better by changing her diet now!!

Has anybody else chosen not to have the biopsy for their child? Is there a really compelling reason to do it?

Thanks for any advice :)

0

Share this post


Link to post
Share on other sites


Ads by Google:

This might help: http://autoimmunityblog.wordpress.com/2012/03/23/orgentec-new-guidelines-for-the-diagnosis-of-celiac-disease-espghan-ttg-elisa-dgp/

It's the new pediatric dx guideline put out last year. I don't know if she meets all the criteria for dx without biopsy but go through it and see.

Thank you pricklypear - that must be the Prometheus Serology, which my insurance doesn't cover <_< That's what my rheumatologist tried to order for me but all of my lab work has to go through a particular lab in order to be covered... how silly, since I'm sure the blood test would be cheaper than the biopsy!

0

Share this post


Link to post
Share on other sites

Oh, a question about the revised guidelines - if she goes gluten free now, would that affect the genetic testing she hasn't had? I wouldn't think so if it's a test for specific genes, but want to make sure in case her doctor wants to order it in the future.

Thanks!

0

Share this post


Link to post
Share on other sites

No, the guidelines are not for a specific lab. They are for dx'ing Celiac disease. Many labs can run the same tests.

She does not have to be on gluten for DNA testing; however, she does need to be on gluten for an accurate biopsy.

0

Share this post


Link to post
Share on other sites




Some doctors won't diagnose without a positive biopsy.

My doctor diagnosed me based on my symptoms and blood test results (my son was just being diagnosed too, so that was another clue) but recommended the biopsy so he could assess the damage and monitor my healing. I guess sometimes it is hard to know if the gluten-free diet is working? He needed a "starting point" in case there we any future biopsies needed.

In any case, my biopsy came back negative so he CHANGED the diagnosis to "gluten intolerant" - which is really quite silly. My son has (biopsy proven) celiac, I had all the classic symptoms, positive blood test, and great results with the diet. In any case, I don't need the "official" diagnosis - treatment is the same, gluten free for life.

I did, however, want a clear, undisputed diagnosis for my son. Since he was only 5 at the time, I didn't want there to be any doubt, ever, about his need to stick to the diet. While we haven't had any obstacles yet, I don't know what kinds of accommodations we might need in the future (summer camps, high school, college dorms, military?, who knows) and going back on gluten at a later date just to be retested didn't sound like a good idea.

You would be surprised how many people don't believe that gluten intolerance is such a big deal. Having some proof of actual damage (not just behavior changes, subtle mood changes, etc.) helped us convince the "non-believers" (mother-in-law, etc.) that my son can never cheat or "take a break" from his diet.

Cara

0

Share this post


Link to post
Share on other sites

If you ever want something like a 504 plan for your child for accommodations in school, you will need a DX from a Dr. If you have a Dr. willing to dx based on the above or other things (an already + parent or sib in some cases) great! Some are willing to look at the obvious while some are not.

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
      104,352
    • Total Posts
      920,503
  • Topics

  • Posts

    • I already did. Thats how i found the place. Its amazing to actually go to a restraunt again.
    • This is EXACTLY what happens to me. It has twice now and both times was after both glutening episodes but once it was the day after and the other time it was a week and a half. So I'm still not sure if it's related or strange bug bites...

      Did they stop happening when she stopped being glutened? Did you decide they were definitely related? I'm really confused by this and would love to know whether to insecticide my house or....
    • Thankyou both! I was wondering if my high levels left much doubt on the diagnosis. I don't see the GI until the 15th Sep and I don't think I can stand to eat gluten in that time. If he tells me to I will do so after then. After 25 years of symptoms I don't think there is much chance of healing my bowel In a couple of weeks. I'm actually terrified of the damage they might find. But I think I will need the endo since there may be other things going on with me. So great they didn't put your son through the biopsy! Once I have a formal diagnosis I have my kids to worry about also. I can't even stand the thought of my daughter having a blood test. I think she would need to be sedated as she is so fearful and pain sensitive. My son is not yet 2 so I don't think they will test him. I'm feeling so off at the moment. I think I have some anxiety and reflux going on complicating things quite a bit.
    • My son's antibodies were 300. Based on his extremely high levels, his pediatric GI suggested genetic testing instead of the biopsy. Genetic testing can't diagnose celiac on its own but combined with such high levels, the gi dr was confident a positive genetic test would confidently diagnose celiac. He warned that biopsies are small snapshots of the intestine and can miss damage. He said this is an approach used very often in Europe but not as much in the US. What sold me on that approach was the ability to put my son directly on a gluten free diet instead of waiting three weeks for the biopsy, during which time he would continue to eat gluten and feel terrible. I'm not sure if this is more common with younger patients though (our son is two), based on the idea that he's had less time to inflict damage that would show in a biopsy? We are very happy that we immediately started the gluten free diet and chose the genetic testing. Our son got the proper diagnosis and his recent number shows a drop to 71 after only 4.5 months gluten free! Not sure if this helps. Good luck and I hope you feel better soon!
    • We have been off gluten for a while now, and symptoms return when I've allowed gluten full meals… so something still isn't sitting right with me.  Checking with her doc about seeing a pediactric GI although I'm not sure how long that will take since we live in small town America. I know she didn't get at least one of the recommended full panel tests but maybe two, can someone help clarify, or is she missing two? DGP for sure and possibly EMA? And if I understand what I'm reading in other posts that the DGP can be more accurate? Thanks Her blood panel results: Ttg ab iga <.5u/ml ttg igg <.8u/ml aga ab iga <.2 u/ml aga an igg <.7u/ml iga 61mg/dL  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,417
    • Most Online
      1,763

    Newest Member
    Suzette Porter
    Joined