Blood Test Positive...biopsy Needed Or Not?

[GraceAnew]

I hope this hasn't already been discussed, but I wasn't finding anything related to what I was looking for...

I recently had blood work done for allergies and celiac sprue because I was having so many problems, it was getting work and was becoming more apparent that it was food related (sugar and wheat). I was told I have absolutely no allergies but the celiac test came back positive. I live in a rural area and the NP that I went to see had never had anyone test positive before for it, so she had to go look celiac up! Based on what she read, she wanted me to come back in to get more autoimmune testing done. So, tomorrow I'm going to ask her about other testing, but... What are your opinions, those of you who have been through all this already?

• Do I NEED to have a biopsy done? I've been reading mixed opinions. A lot of medical sites say you can't switch your diet until you've gotten a positive blood test and then a biopsy and THEN you can change your diet. (I'd rather not get a biopsy if it's not needed!) I've already removed most gluten though because I couldn't handle the pain anymore...
• Are there other things I should be asking about?
• Is this something that I can keep working with the NP with or do I HAVE to see a specialist? I'm a little concerned I should be getting other kinds of tests done but she might not know about... I put off going to the doctor for a long time for fear of being blown off or getting misdiagnosed over and over. She brought up Celiac right away at the initial appointment. So, I have some confidence in her that she "thinks outside of the typical medical doctor box" and is willing to work with me and listen.

Thanks for any and all advice you can lend!

[DonaldandAlanda Evans]

I personally declined the biopsy. I was at the point where I was sick of medical procedures, and wanted to start the road to recovery. Every single blood test there is for Celiac, I was positive.......and that was enough for myself and my doctor. I have an appointment at the 3 month mark to re check my antibody levels to see if they have gone down. If they haven't gone down ,or if my symptoms are still severe I will then have to biopsy to rule other things out. It's really personal choice.

[nora-n]

Here in europe, we do get the biopsy done.

That is because the biopsy is the official standard for the diagnosis.

Here in this country we get about 200$ a month if diagosed, so we need an official diagnosis.

Also, one needs something to compare with just in case there are complications.

The risk of bowel cancer is greater with celiac. (but decreases to normal on the gluten free diet)

So one needs to get looked at, and get a baseline to compare to.

That is what it is like here.

Here only children get sedated, and the procedure is very quick but a little bit uncomfortable.

nora

[tarnalberry]

I'm not sure what about getting biopsies taken from your intestines is supposed to allow you to automatically prevent your arm from stuffing bread in your face. Is there some strange switch in the intestines I don't know about?

Seriously, the idea that it is impossible to choose your food until you have a medical procedure is a little ridiculous. My husband doesn't like tomatoes, cheese, or chocolate, and won't eat anything that has any of those ingredients. He was able to do all that without a medical test, based on taste alone! I never had a biopsy, but I haven't had any problem with finding random gluten in my mouth or the like.

Yes, yes, I'm being a bit snarky here - not at you, but at the advice you've been given.

Not every doctor believes that biopsy is the gold standard, but many do. Not everyone finds that they need a lot of followup testing (particularly if they can remain gluten free), but not every doctor will do or know how to do followup testing either.

It's really up to you. Are there some potential advantages? Sure. Are they the same for everyone? No.

I certainly don't regret not getting a biopsy. And if my child turns out to have celiac, I will get her tested (or just take her gluten free) regardless of what a doctor says about MY celiac status.

[GraceAnew]

Thanks everyone! The NP didn't think a biopsy was needed either. I'm glad. I just have to wait and see what the results are on my other autoimmune testing. I'm hoping it's negative.

Now to start tossing out the gluten that's still hanging out around here...