False Negative Biopsy Results?

[mollymoo]

Hello everyone, I'm new to this forum and also new to wheat/coeliac issues and wondered if any of you could give me your opinion on the following please.

I have been suffering from classic coeliac symptoms and had a blood test and a biopsy a couple of weeks ago, both came back negative much to the surprise of myself and my consultant. However, he said it would do no harm to follow a gluten free diet which I have been doing and already feel so much better. I am now wondering if my test results were false negatives because although I wasn't on a gluten free diet before the tests were done, my usual diet is very balanced with lots of salad, veg and plain meat, no bread, very little pasta and rarely biscuits and cakes. When we eat out I tend to eat more "gluteny" things like pasta, noodles, naan breads etc etc and that is when I become very sick... I am never sick after I have eaten at home. Before I had the biopsy done, I hadn't eaten out for a few weeks which is what makes me think that there possibly wasn't that much gluten in my system therefore showing the results to be negative. Do you think it's worth discussing this with my consultant or are the biopsies always 100 % correct?

Any opinions would be welcomed as both myself and my consultant are quite mystified as to why I keep getting sick when every test he does comes back negative..

[WinterSong]

You may not have been consuming enough gluten to test positive. I think that most people who go on a gluten challenge to get retested have to eat something like 4 pieces of bread a day.

That being said, yes there is a percentage of Celiacs who will test a false negative. Blood tests have a 20% false negative rate. I'm not sure what it is with biopsies, but it's definitely not 100% accurate all the time.

Since you seem to eat gluten-light to begin with and get sick from pasta and such, I'd say the diet is definitely worth a try. Be sure to look at hidden gluten in supplements, toothpaste, sauces/dressings, old cookware, ect.

Good luck!

[mollymoo]

Thank you so much for your response, it's good to know that my results are possibly not accurate and there may still be hope of discovering why I get so sick. I think I will discuss the situation with my consultant at my next visit.

From looking at your name, I am guessing you're from New York so i just wanted to say I was there last september and I absolutely loved it to bits....can't wait to visit NYC again.

[love2travel]

I recently read (an article on here, actually) that in the US only 40% of biopsies are done correctly - in Canada it is 39%. The biggest reason is that so few areas are biopsied. Most apparently take 3-5 and at least 8-11 should be taken for accuracy. Hopefully more and more surgeons are becoming educated on this!

For my gluten challenge I was told to eat the equivalent of 4 pieces of bread for 3 months (I did a bit longer as I waited for my scopes).

All the best in your quest!

[mollymoo]

I recently read (an article on here, actually) that in the US only 40% of biopsies are done correctly - in Canada it is 39%. The biggest reason is that so few areas are biopsied. Most apparently take 3-5 and at least 8-11 should be taken for accuracy. Hopefully more and more surgeons are becoming educated on this!

For my gluten challenge I was told to eat the equivalent of 4 pieces of bread for 3 months (I did a bit longer as I waited for my scopes).

All the best in your quest!

It was interesting to see the percentages of biopsies done incorrectly. I don't know what the figures for the UK are but I know my consultant took only 3 biopsis when he did mine. After being gluten free for about 3 weeks, I am already beginning to feel so much better, lots more energy, headaches have gone, no vomiting or diarrhoea, aches and pains disappeared and generally much happier with life so even if I can't get a definite diagnosis, I'm going to stick to gluten free from now on. I'm not sure that I would want to be re-tested following a gluten challenge anyhow as I know all my symptoms will come back as soon as I start eating gluten again and to me it's just not worth going through all that sickness.

As long as I'm symptom and sickness free, the gluten free will do for me !!