Accuracy Of Biopsy

[StephanieL]

Our GI Dr. is insisting on a biopsy. From what I read, the results are not 100%. What is the accuracy rate of it? My son is only 3 and the idea of doing a test with anything less than 80-90% accuracy is not a test I am interested in.

Any statistics are appreciated!

[nora-n]

Here in europe, the biopsy is needed for a diagnosis.

But my daughter got the diagnosisi anyway, with negative biopsies and negative bloodwork (she had been off gluten and got a huge improvement and then she was back on for a few weeks, but it was probably not enough) (her symptoms caused the doctor to give her the diagnosis)

Ask for enough biopsy samples, like at least 12-15

[TrillumHunter]

It sounds like you've read a bit about it. The reason the biopsy isn't so great is because damage can be spotty if it is recent. If the dr only takes two samples, which is not unheard of, he's LIKELY to miss it.

Ask the dr to explain the process to you. Ask how many samples he will take. Things can look totally normal by eye. The samples need microscopic examination to look for blunting.

Somewhere on the net you'll find the square footage of the small bowel. it's mind blowing, especially when biopsies are the size of a grain of rice.

[Pac]

Biopsy is still the "gold standard" of celiac disease diagnosis, but IMHO it is an outdated requirement.

The only good thing about biopsy is that if it's positive (total villous atrophy), the chance that it is anything else than celiac is close to 0%. Bad things on the other hand: 1) It takes time to develop villous atrophy, so nothing like early diagnosis is possible if you require positive biopsy first. 2) About 5% of biopsies in celiac patients are negative - the villous atrophy can be patchy. 3) "Classic" textbook celiac disease is being outnumbered by other not so clear gluten intolerances or "atypical celiac diseases", that can lead to similarly serious health problems and higher risk of death like celiac, no villous atrophy needed.

For all other food intolerances there is only one test you need to "pass" in order to get diagnosed - if removal of the problematic food brings relief and problems reoccure after reintroducing this food back into your diet, then you should avoid it. Why shouldn't this standard work for gluten as well?

If doctors find antibodies against milk/soy/eggs... you are told to avoid those foods, if you have antibodies against gluten, you are told to keep eating gluten because there's a belief it can't cause any problem other than villous atrophy. If a doctor told you that your itchy rash and astma is caused by peanut allergy, but you shouldn't avoid them until you get anaphylactic shock that was obviously caused by eating peanuts, would you listen to this doctor?

That's just my two cents, everybody has to decide for themselves.

[StephanieL]

Pac, this is exactly what my issue is. We have a long list of my sons food allergies. He is 100% asymptomatic for celiacs though. How would I know if he was improving (blood test alone to see if his TGG is down?) We found the + blood testing because we saw an endocrinologist for something totally different.

I am just so against doing a biopsy. I wish the Dr. wasn't to pushy about it (though we are seeing a different Dr. for a second opinion. Maybe she'll be a little more open to just removing the gluten and seeing what happens?)

Thanks all. I really wish there were harder numbers for this to help us make the decision!

[nora-n]

There is another option, the pill cam.

Some people have posted here that they got the pill cam, after some negative biopsies, and the pill cam clearly showed villi damage. And, sometimes the damage is at the wrong end of the small intestine and the pill cam finds it.