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
      104,647
    • Total Posts
      921,596
  • Topics

  • Posts

    • Tell your medical doctor that you want a full Celiac panel before you go gluten-free.  A family history of Celiac should be enough reason to run one every couple of years.  The stool tests aren't considered medically valid, so they probably won't accept those.  It would be good to know if you actually have Celiac.  That would tell you how careful you have to be with gluten consumption.  If you don't have Celiac, it will make your life easier...you can still be gluten-free but you might be able to do things like take a burger off a bun and eat at most restaurants safely.
    • Sure, if you are feeling better from the Celiac, now you might notice other things you didn't before.     a very real possibility is that you have changed your diet and are now eating something you didn't eat much of before.  Or you are eating larger or smaller amounts of protein or fiber....that sort of thing
    • This board is quite old but I'm hoping someone can continue on this topic. I am 61 years old and in all my life and doctors' visits, I have never had a western doctor ask me if I have a family history of celiac or suggest a gluten free diet. In all honesty, I have only started having what could be considered "gluten sensitive" symptoms within the past 2 years - chronic, unexplained bouts of diarrhea, mainly. Although bloodwork has shown in the past 2 years I now have high cholesterol, blood sugar, blood pressure and a bone density scan showed osteopenia. My PCP put me on meds for everything, of course. I recently began seeing a naturopath - and when I was running down my health history and list of symptoms she immediately asked about the family history of celiac. My father was positively diagnosed, through biopsy, with celiac sprue about 25 years ago, when nobody talked about gluten sensitivity. Anyway, she had me do the full panel testing at Enterolab. I have one celiac gene and a gene that indicates neurological manifestations of gluten sensitivity (I have long been plagued with panic attacks and depression). I also showed extremely high (215 units, below 10 is normal) for fecal anti-gliadin and varying high results for dairy, eggs and soy. My fat malabsorption stool test also tested high (431 units and normal is less than 300). The interpretation from Enterolab and my naturopath both strongly advised I eliminate gluten from my diet for the rest of my life. Naturopath said after a year or two I may be able to try introducing limited dairy, eggs and soy back; but not until the glutin response is completely under control. I am really struggling with this. Everyone I've talked to (including adult children, spouse, other family members, friends) is skeptical about me making such a radical change in my (our) diets based on these results. They seem to view gluten sensitivity as a "fad" and think I am going off the deep end. "Get a second opinion" - or "talk to your PCP about it". I've read enough to know that my PCP will not be of much help. And since I really only had one irritating symptom that could be related to gluten sensitivity, it's not like my life will be radically improved by going gluten free. I guess I could choose to ignore the test results - for now. I'm trying to view going gluten, dairy, egg and soy free as preventative and something that will contribute to a healthier life as I age. But it's so hard ... especially when the people who mean the most to me think I'm over-reacting and kind of cuckoo. Can anyone help me out here? I feel so alone ...  
    • Hello everybody, I'm new to the forum but am so happy to have found somewhere where people living with coeliac can share their thoughts! I've only been gluten-free for two weeks.  About three days in, I started experiencing awful heartburn which hasnt let up and I'm wondering if anyone else had this after giving up gluten? It wasn't a typical symptom for me before so feeling very uncomfortable.  I am not due to see my gastro consultant again until December and my GP (who was about as helpful as a chocolate teapot!) just gave me lansoprazole (its a PPI) which isnt even touching it.  Just wondering if giving up gluten is unmasking other symptoms or if this is a normal or common withdrawal effect?  I feel like burping/belching could help but its something I've never been able to physically do. Im in my early 30s so hoping its not another thing... Any advice would be appreciated A
    • O sorry. Negative biopsy. But this was months ago but i have no energy. My teeth are rotting i feel sick all the time. And i was told by someone who has celiac that it can also be difficult to have a diagnosis cause you would have to eat 6 pieces of bread for 6 weeks in order to get a proper diagnosis. And i just know that something is up
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,653
    • Most Online
      3,093

    Newest Member
    KerryO
    Joined