Biopsy result

[tetloww]

Does anyone know if an accurate diagnosis of coeliac can be made from biopsys if not been eating wheat and gluten. My bloods have always come back negative because I cut right down a long time before doing the blood tests. Iv had colonoscopy today and 12 biopsys taken consultant told me I would have to go back to eating wheat and gluten for at least 2 months to get a positive on blood test but made me believe that biopsy is the only way to get a proper result if I didn't. Any one else had diagnosis from biopsys without having to eat wheat and gluten??

[Marz]

I believe there is improved testing via Cyrex Labs of America - done by Regenerus in the UK. There are far more detailed tests done - albeit these are private. Shows up gluten sensitivity in the absence of full blown celiac. You could contact them about the continuation of eating gluten - as I am sure I have read somewhere - that it is not necessary. Could have been an American website. Sorry to be vague

[tassie]

I'm pretty sure the biopsy won't show anything either if you haven't been eating gluten for at least 6 weeks prior to the biopsy. The biopsy may be useful in picking up or ruling out other issues but not coeliac. The reason being that the gut may well have healed from the gluten so the damage won't be present.

[pretender]

In answer to your question. 1. I was first diagnosed in 1955 by symptoms/investigations that were non invasive, in 1962 I had a capsule biopsy x-ray guided which indicated that my gut was OK. I was then weaned back onto normal foods. In 2007 I had a blood test (IgA) which came back positive. On March 30th 2007 I saw the Gastro and went totally wheat free( not knowing about the gf diet) On May 25th I had my endoscopy/biopsies which came back as having active CD. This I later queried having issues with the GF diet so in 2011 I had another endoscopy/biopsies/bloods by a Professor, specialising in CD. The 1955 diagnosis was confirmed by HLA-DQ2 positive, my gut was classed as normal but I had reduced folds, D2. There are several endescopic markers for CD. So as far as I am concerned if you are a coeliac you can stop eating wheat(gluten) eight weeks prior to endoscopy/biopsies because the damage has already been done. I would expect the longer you give up wheat/gluten the harder for the test to give an accurate result.

[Hidden]

Hello, no, biopsies are not conclusive if you've not been eating wheat. They will come back negative. The same happened to me, I was told that I needed to eat wheat for 6 weeks to have a definitive diagnosis through biopsy or blood tests but I've never had time to be that unwell for 6 weeks!

[Hidden]

A friend of mine had a biopsy for CD and had to be eating gluten for at least 2 months for proper results.

His biopsy was positive and his blood test was negative.

He was confused by the conflicting results so he contacted the Celiac society and they told him if the biopsy was positive then he was definitely celiac.

[Hidden]

You have to eat gluton for tests otherwise you cant get a true result. The tests will come back negative if you are not eating wheat and gluton.

[tetloww]

It's looking like I'm gonna have another tormenting wait. Well annoyed with consultant if it true that I should of been eating proper. As he have me the choice. And only said that it would then get a positive blood test. Nothing about he biopsy result. The actual consultant that did the test yesterday didn't seem bothered that I wasn't eating wheat and gluten. Ive not been 100 %. But been very careful. I'm just hoping the 3 Jaffa cakes I ate the other week and the little nibbly bits I had last week have stayed in my system. Thank you all let the waiting game begin x

[exDancer]

I'm confused. I always thought the biopsies were taken from the small intestine via a tube down the throat (forget the name of the procedure) and not via colonoscopy which is an examination of the large bowel. Surely you can't get a positive biopsy result from samples taken from the colon?

[tetloww in reply to exDancer]

I'm totally confused too. Has gastroscopy over a year ago as well as colons op but they didn't take any biopsys They really thought at this time they were dealing with IBS. So as I did my own food tests and improved with the help of dietician thought things would settle. But since then I have been put on b12 injections for life and had 2 lots of folic acid tablets. I'm in the 2nd lot now and also ferrous sulphate tablet. Consultant did say that I would have to eat the food that were making me I'll again but I refused as he made it out that that was for blood test. They are trying to rule out inflammatory bowel and Crohn's disease. But made it out that it would also show up coeliac. 3 years have been trying to get the problem diagnosed and looks like it gonna be a lot longer before I get my answers.

[exDancer]

I can't tell from your name whether you are male or female, my gastric problems started with the menopause and we wasted years on treatments for IBS which I consider to be a copout. The terrible news is that (as I suspect you know) in order to get a true result from another gastroscopy (if you are brave enough) and/or blood test is for you go back to eating gluten for 6 weeks or so.

Many people decide to go it alone and just embrace a gluten free lifestyle because they feel so much better - but that's up to you - at least you're getting the B12 injections and folic acid which can only help.

Try the Coeliac, DH and gluten free message boards for more help. Also membership of the Coeliac society UK is free for the first year.

[tetloww in reply to exDancer]

I'm female and nearly 48. I was diagnosed at 18 with IBS but got it under control and only had a couple of flare ups when I was pregnant with my son who is 16. When all this started again I had dip stick trace of blood in urine so ended ip being refered to urology as they thought the pain and blood might have been gallstones. It was over a year later that I got refered to gastro because I had impacted bowel and the pain was just going worse. I had already started on illuminating foods. He refered me to dietician for again IBS and she helped lots but I still kept getting kicked so I then decided gluten and wheat free about 95%. I thought I had cracked it and had it under control with in reason and was ready to see dietician again for hel with gluten free etc. I have also lost over a stone in weight and need to put at least half a stone back on. I eat healthy always made my own meals and never lived off ready meals. I gone back to being able to eat 3 times a day with snacks in between but my weight is still not coming back and bloods are not under control. It's a nightmare sometimes and so annoying about not knowing what the cause is. Notated what now I think I will still see dietician and ask her for help. Thanks for info too

[exDancer]

Oh dear, you're having a bad time aren't you? I don't think you'll find anyone who's gone gluten free before gastroscopy who's got a reliable result for coeliac disease, in fact they usually present as normal. So the bad news is that you'll have to eat gluten every day so 3 Jaffa cakes the other week plus nibbles won't be enough.

If you are coeliac and then go totally gluten free you'll soon feel better and will gain weight (I gained too much). Do you think your early 'IBS' could have been the beginning of your gluten problems ...... most of us were fobbed off with an IBS diagnosis to start with.

I think you can be non-coeliac gluten sensitive (but not sure, someone may correct me there!)

I had a gastroscopy and went gluten free right after, but they didn't take biopsies but I felt so much better I've decided I'm coeliac and still eat accordingly. I refused a second gastroscopy.

[tetloww in reply to exDancer]

Think because of my weight lose and iron levels they are now being cautious. They now know it is not IBS as this does not effect your bloods. My catch 22 is when I ask go if I'm to stay only iron tablets after the 4 months. They have put me on she just said they need to find a cause. I have croon disease in my family. Sister and nephew ( my brothers son ) I'm hoping that when biopsys come back and nothing sinister is found the consultant then will give me the go ahead to go down the celiac route ie dietician advice and any other help I can get. I havnt done it 100 % just due to not having the diagnosis. It makes it easier if I knew for sure. And like you no way am I going back to eating gluten. I've come to far on the good side for that. I did wonder if maybe the menopause might have brought this on but my mum was 53 before she even started it. So think am gonna go for the mis diagnosis when I was 18. Thank you x

[rc91058]

I was told that the blood test is only accurate in 90% of cases(not including me)the endoscopy and associated biopsey is accurate but be warned it is a very unpleasant procedure but you just have to endure it for a few minutes