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Pondering Skipping Biopsy...

glutenfreejd

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glutenfreejd Newbie
glutenfreejd
Posted

Hi everyone, I'm new to the forum. A few months ago I had a positive blood test for celiac and was referred to a specialist for a confirmation biopsy. In the meantime I went gluten free as my symptoms had become so bad I was having difficulty working. The other day I got a call back from the clinic with my appointment date, but now I'm not sure I want to do it as I would have to start eating gluten again for it to be accurate. Since I've been dating gluten free I've noticed I've become even more sensitive, if I accidentally eat something a bit contaminated I have a pretty strong reaction. Is there any benefi to the biopsy that would compel me to go through this process I imagine to be so horrible? Thanks:)

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Katrala Contributor
Katrala
Posted

Most doctors will tell you to not go gluten-free until the biopsy.

The good thing about the biopsy is that you'll have a baseline and any other problems can be discovered.

Also, you'll have a 100% diagnosis.

If you're OK with not having an official diagnosis (you may find a doctor who will diagnosis without, though,) then go ahead and skip it.

From personal experience, I was glad I had it. But there are many people here who didn't and are still happy with their choice.

MitziG Enthusiast
MitziG
Posted

Dr Alex Fasano is considered THE leading expert on Celiac Disease. He recently stated this in Gluten Free Living Magazine:

"I was the one who said the gold standard was the biopsy. Now

I am saying I was wrong.

The blood tests are extremely accurate at showing a positive Celiac. False negatives- very common. False-positive? nope.

You have Celiac Disease. You can have a biopsy, but, since you have been gluten free for awhile, even if you go back on it for weeks, or months...there may not be enough damage to show positive in a biopsy.

They may do the biopsy, and not take enough samples, or not take them from the right spots, and miss the damage. Celiac is often patchy.

Or they may biopsy damaged areas, and the lab tech who reads the samples may not be experienced, and may miss it.

So...if you get a negative biopsy- what will you do? Probably start questioning yourself. Doctors cant see beyond lab results generally, and they will most certainly dismiss it, and say all of your problems are not from Celiac, and write you a rx for antidepressants.

That said, I had the biopsy, and it was positive, and I needed that confirmation to resolve to stick with the diet. But I also had not been gluten free when I had it.

Not saying you shouldn't do it...but be prepared for the very real likelihood that it will deny what is most definitely true.

Lisa Mentor
Lisa
Posted

Often times, a biopsy can find additional issues, which otherwise might go unresolved. And, with digestive concerns for a period of time, a biopsy can look for the level of damage.

I'm certain you will get opinions from either directions. Take it all in and make the choice you are most comfortable. :)

MitziG Enthusiast
MitziG
Posted

Often times, a biopsy can find additional issues, which otherwise might go unresolved. And, with digestive concerns for a period of time, a biopsy can look for the level of damage.

I'm certain you will get opinions from either directions. Take it all in and make the choice you are most comfortable. :)

This is a very valid point. I am not against biopsy, by any means. I just worry that people feel they aren't a "real celiac" without that dang biopsy report!

luvs2eat Collaborator
luvs2eat
Posted

Apparently my blood test was SO positive that my doctor told me biopsy wasn't necessary! I ended up having one several years later for heartburn/GERD issues and there were celiac indications in there, but as it turned out, the biopsy really wasn't necessary. The blood tests told me what I needed to know... NO MORE GLUTEN FOR ME!!

glutenfreejd Newbie
glutenfreejd
Posted
  • Author

Thanks everyone, that was really helpful. No test for me!! I don't feel like a slip of paper will make me feel any better. I've been feeling so great, I don't want to mess with it. Thanks again!!

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Mom-of-Two Contributor
Mom-of-Two
Posted

My bloodwork was also super positive, I see the GI this Thursday and am also thinking I may not do a biopsy. If you are feeling better, I would hate to see you reintroduce gluten :( sounds like you have your answer!

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      Wheat in cow feed would not equal gluten in the milk, @Wheatwacked, please back up extraordinary claims like this with some scientific backing, as I've never heard that cow's milk could contain gluten due to what the cow eats.
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