Hello everyone. Basically I've had a biopsy come back as normal and a blood test that showed no coeliac

[glutenfreegiraffe]

Hello everyone. Basically I've had a biopsy come back as normal and a blood test that showed no coeliacs. I only ate a small amount of gluten before both. I asked the GP at the time and he said that it wouldn't matter because the antibodies would still be present. A few years down the line and I'm not sure whether it's worth me trying again as this is always in the back of my mind and I struggle with no support diet wise. Thanks for your time x

[InVivo]

Actually, you need to be eating gluten every day for at least 6 weeks before a blood test, for the anti-body titre to be high enough to be measured in the blood. The university of Chicago Celiac Centre recommends half a piece of bread per day for this time.

I could never do that now! I'd be hospitalised and totally non-functional on that amount of gluten.

Same goes for the biopsy, there are stages of development that the villi go through (known as the Marsh classifications) before you get to total villous atrophy - which is the diagnostic criteria for CD. You may have been in one of these developing stages, rather than the end stage.

Getting a diagnosis is not all that easy unless you've been eating gluten properly and your small intestine is sufficiently damaged.

If you know it makes you ill, you'd have to be prepared to go all the way with it to try for a diagnosis.

[gfmum1]

I went back on gluten for several weeks before having the biopsy done & it came back negative anyway. After having been gluten free for several months, I found that eating gluten for the challenge affected me more than it had done before I'd gone gluten free, although not as badly as some people are affected.

Despite not being coeliac I know I feel better without gluten so I've gone back to gluten free. But I'm not feeling the benefits as much as I did first time round; whether that's because I've become more sensitive to gluten now, or whether I'm just not being as careful to avoid gluten is something I've not worked out yet. I've read of other people who've had the same problem. Part of me wishes that I hadn't bothered going for the test at all but you may decide that's a risk you're prepared to take.

[violetkathy]

Are you scheduled for a biopsy? Are

you eating gluten?

Any changes in your diet can affect the

accuracy of your biopsy results. It is

necessary for you to be eating gluten

every day for at least 12 weeks before the

procedure. If you are scheduled for a biopsy

and are not eating gluten, talk to your

doctor about what is necessary to obtain

accurate results. If you have a biopsy and

have eaten gluten only a short time before

the test, you and your physician will not

know if a negative test result is accurate or

due to your diet. This is from the University of Chicago Celiac Disease Center.

I'm an Endoscopy nurse in the UK. We tell people to eat gluten containing food twice a day for 6 weeks. 12 weeks would be even better. We are confirming the diagnosis by checking damage to the small intestine so the more damage you can create the easier it is to diagnose.

[LilacPrincess in reply to violetkathy]

I find this all very confusing . .

I am due an endoscope and got told my consultant in Scotland 4 weeks, have read others say 6, now you say 12??!

Violet, can you please specify what advise your department gives on the twice a day - is that big plates of pasta or can it just be a piece of toast?

Would be so much better for us all if the advice given was standard across the board!

Thanks xx

[violetkathy in reply to LilacPrincess]

We don't give a specific amount of certain foods to eat. We tell people to eat gluten containing food twice a day. A large plate of pasta, two slices of bread/toast or fish and chips should be enough. It's better to eat too much, not for you but for test purposes. I would make the most of eating gluten while you can, I agree it would be better if the advice was standard. The longer you eat gluten the more you will damage your small intestine which will show up in the biosy sample. The damage caused confirms the diagnosis of coeliac disease.

[LilacPrincess in reply to violetkathy]

Thanks :o)

[Hidden]

Wondered if IBS would cause coeliac type damage to villi. Two plus years after diagnosed coeliac developed IBS badly.