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Help! Biopsy? Should I Do It?

BrittLoves2Run

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BrittLoves2Run Apprentice
BrittLoves2Run
Posted

Hey guys.

I got the news yesterday that my Celiac panel came back with

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JonnyD Rookie
JonnyD
Posted

Completely your call. If it were me, I'd stay on gluten for now and have the biopsy. Knowledge is power. Plus, positive bloodwork with a positive biopsy make the diet easier to stick to.

Aly1 Contributor
Aly1
Posted

You likely would have a negative result 2 months down the road so you're right that you need to make the decision now. It's a personal call. If you no longer had the option of having a biopsy (because too much time had passed and it would no longer yield correct results) would that bother you? Some of us really want a dx; others don't really need it.

I *think* if my celiac bloodwork came back positive, I would not really need the biopsy...but I'm not sure. I have seen some recent research out there where calling the biopsy the "golden standard" is being argued against by many in the field; I suspect in a few years they will no longer be doing it so much. But that's just a guess.

Again, the call is yours. It may be that your doc will not formally dx you as celiac if you do not have the biopsy. Something to find out / consider...

BrittLoves2Run Apprentice
BrittLoves2Run
Posted
  • Author

Completely your call. If it were me, I'd stay on gluten for now and have the biopsy. Knowledge is power. Plus, positive bloodwork with a positive biopsy make the diet easier to stick to.

So i'm not stupid for making the doctors appointment? my mother says i'll piss off my doctor. I'm not trying to insult him, but the man didn't even want to test me for Celiac claiming "it was highly unlikely" and then I came Positive.

BrittLoves2Run Apprentice
BrittLoves2Run
Posted
  • Author

You likely would have a negative result 2 months down the road so you're right that you need to make the decision now. It's a personal call. If you no longer had the option of having a biopsy (because too much time had passed and it would no longer yield correct results) would that bother you? Some of us really want a dx; others don't really need it.

I *think* if my celiac bloodwork came back positive, I would not really need the biopsy...but I'm not sure. I have seen some recent research out there where calling the biopsy the "golden standard" is being argued against by many in the field; I suspect in a few years they will no longer be doing it so much. But that's just a guess.

Again, the call is yours. It may be that your doc will not formally dx you as celiac if you do not have the biopsy. Something to find out / consider...

Personally, Just hearing that it came back Positive has been good enough. I just don't want to hear that 2 months down the road my doctor insists on doing the EGD. I'm more concered about the thyroid and it being maybe higher than it should.

sa1937 Community Regular
sa1937
Posted

If you are going to have an endoscopy, you need to stay on gluten until it's done. Otherwise you may come up with a negative biopsy. If you have had a positive celiac panel, there's no doubt in my mind that you have it. False negatives are fairly common but not false positives.

When you see your doctor today, make sure you pick up a printed copy of your test results. And ask questions you may have as to why he wants you to go gluten-free and then come back in two months ??? Maybe he's willing to diagnose you without an endoscopy.

With a TSH reading of 4.5, you may want to ask for a referral to an endocrinologist.

Edit: After reading your last post, who cares if you piss off the doctor? We need to be our own advocates!!!

Ollie's Mom Apprentice
Ollie's Mom
Posted

I would find out if he will give you a diagnosis based on the bloodwork alone. If yes, then a biopsy isn't necessary for a dx and I personally wouldn't put myself through it.

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BrittLoves2Run Apprentice
BrittLoves2Run
Posted
  • Author

I would find out if he will give you a diagnosis based on the bloodwork alone. If yes, then a biopsy isn't necessary for a dx and I personally wouldn't put myself through it.

I saw my doctor this afternoon. He said only one of my numbers came back high and it showed a more "chronic problem" i can't remember what number he said it was but he said normal is under 11 and mine was in he 60's. He said he thinks it's what I have and he'd like me to try the diet 2-3 months. If I am feeling better then he will diagnose off of that alone without putting me through a biopsy. He didn't seem concerned about my thyroid stating that "you can't believe anything you come across on the internet" and "some people WANT to have these illnesses" This really irks me knowing all the women in my family are on medication for under active thyroid!

BrittLoves2Run Apprentice
BrittLoves2Run
Posted
  • Author

I'm pretty sure the doctor said IgA was the one that was way above normal. Where 11 or under being normal,I was in the 60's.

ravenwoodglass Mentor
ravenwoodglass
Posted

I saw my doctor this afternoon. He said only one of my numbers came back high and it showed a more "chronic problem" i can't remember what number he said it was but he said normal is under 11 and mine was in he 60's. He said he thinks it's what I have and he'd like me to try the diet 2-3 months. If I am feeling better then he will diagnose off of that alone without putting me through a biopsy. He didn't seem concerned about my thyroid stating that "you can't believe anything you come across on the internet" and "some people WANT to have these illnesses" This really irks me knowing all the women in my family are on medication for under active thyroid!

You may want to consult with an endocrinologist for the thyroid issues. As far as the celiac goes IMHO your doctor is spot on. If the diet solves your issues and the repeat bloodwork done at 3 to 6 months shows your levels have gone down then you are diagnosed. Your doctor does sound like a bit of a jerk though.

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