coeliac test

[Gin30]

Hi,

I was hoping someone my be able to give me some advice. I had a routine blood test recently and I've been called back to the doctors because they want me to have Coeliac blood test.

I had this test a few years ago and it came back negative so I'm surprised they want me to have it again.

I've looked at the symptoms list and I have a lot of them and have felt lousy for years. I gave up trying to find out what the problem is when they couldn't work out what it is despite numerous tests and have just been trying to live with it.

So what I want to know is, Could I have it even though the last test was negative. And how do people cope on a gluten free diet?

I'm grateful for any advice

Hello,
That's really odd that they are testing you again.
Make sure you keep eating gluteny food as normal until you have your test or it might not work.
What symptoms have you been having? I'm sure lots of coeliac symptoms overlap with plenty of other illnesses - with DH he was a right mystery until completely by chance I saw the word 'coeliac' on a packet of crisps, asked my mum what it meant and when she told me I thought "oh!".
Could also be possible that you have a wheat problem without being coeliac I guess.

Hi Thanks for your reply.

I have problems with stomach and bad fatigue. I have mystery symptoms for years including a lot of aches and pains and tingling in my hands and feet.

I had to have MRI scans and all sorts but they never gave me a definate diagnosis, said possibly fibromyalgia (think because they couldn't find anything else)

I kind of got fed up with doctors so didn't bother pursuing it. Only had a blood test as I have been feeling particuarly run down and my glands were up.

I wondered if something showed up in the general blood test to make them want to have the coeliac test???

It's funny (odd not haha) as I'm actually going through seemingly chronic pain and have been looking up a lot about ME/fibromyalgia etc. I looked at the NICE guidelines for ME and they actually suggest coeliac as something to be ruled out first. Other things include lupus and hypothyroidism. I am seeing a doctor on Wednesday and will be asking to start this process.

May as well have the coeliac test again just in case (as I said - make sure you eat gluten just like normal) - but TBH it sounds like what you really need is better doctors!

It would be a relief to find out whats causing the problems. Its frustrating not knowing.

Good Luck for wednesday

The coeliac blood test is not very accurate. For it to have a hope of working you must eat significant amounts of gluten each day for several weeks prior to the test. If its negative again and they wont offer you a biopsy then I'd be inclined to just go gluten free for a few months to see what difference it makes.

There is a recent thread on how we live gluten free at

www.mumsnet.com/Talk/general_health/a1522292-Coeliacs-Can-you-please-list-examples-of-daily-diet-Thanks

Good luck with getting a diagnosis

When you say significant amounts. How much do I need to be eating?

Thank you for the link

I borrowed a copy of 'Coeliac Disease for Dummies' from the local library and found it very useful.

What they say on gluten intake prior to blood test is at :

www.dummies.com/how-to/content/blood-tests-to-help-diagnose-celiac-disease.html

( of course your local NHS guidelines may be different - cant imagine that they would want to be associated with 'Dummies' )

FWIW It seems that both the Irish & Ozzie Coeliac societies suggest four slices of bread a day

www.coeliac.ie/coeliac_disease/getting_diagnosed

www.coeliac.org.au/coeliac-disease/diagnosis.html

Thank you. I'm a bit annoyed that my doctor has never mentioned this to me.
All i got was a message from the receptionist that i have to have it done.

I'm starting to realise just how much gluten i've been eating though. It seems to be in so much food that I eat. I had no idea!!

It's really quite outrageous, flour is used as a thickener in a lot of stuff for a start. Ridiculous how many things like soups or sauces are gluteny when they really don't need to be. And coatings! Flour on chips FFS. Small amounts but if you are a coeliac you have to avoid it all. One good thing about DH getting diagnosed has been that it gave us a nudge towards cooking a lot more from scratch.

Also, given how many other symptoms you've been having it might be worth looking at the current ME/PVFS/CFS diagnosis thread (also on general health board). Not saying you have any of those, but so many symptoms overlap (with fibromyalgia too) and the thread has a lot of info about things that should be ruled out.