Hello - getting a test....

[silvercue]

Hi, new here. I decided I need to find out if I have an intolerance or similar due to years of symptoms. I guessed Wheat/gluten were the most likely culprits so thought not having beer and bread for a few days would be an indicator.

I don't think that worked too well. I didn't realise how many foods are a no-go and sometimes I forgot and well, I have decided to get a proper test.

The one I saw says I have to eat Gluten every day fro 6 weeks or the test won't work. Is this the only option?

Thanks

[Regalbirdy]

Hi silvercue,

Welcome!

How many days did you try to be gluten free for? Due to the times you forgot or found it too challenging, you may find that it might not matter too much - as long as you now stay on gluten foods until tests are done.

The test you already know about is the main test used in the UK. It looks for antibodies to gluten in your blood - which is why you need to be eating gluten. There are other tests such as the Cyrex tests, but these have to be done privately and you may find the NHS doesn't recognise the results as readily. Worth considering if you are hoping for ongoing long term support should any test turn out to be positive.

You need to have a conversation with your GP.

I hope this helps.

[silvercue in reply to Regalbirdy]

Thanks.

I would love to talk to my GP but due to a new system they won't make any appointments right now! I have been told to call back in a week for 3 weeks now.

I only tried GF for a week - 10 days..... but I know I have messed it up here and there.

Is the antibody test conclusive? It won't diagnose in correctly will it?

Beer and bread are just about my favourite things!!!!

[Regalbirdy]

The NHS coeliac blood test is very good, but like most tests it is not perfect. However it is very unlikely to give you a false positive - in fact it is rumoured to do the opposite for those who have the very early stages of Coeliac Disease. That said, it is reported to be accurate upto 95% of the time, so try not to worry. It's also such an easy test to have done.

The accidental eating of gluten during your 10 trial will probably count in your favour because most people eat more gluten on some days more than others; but as I said before it is a conversation to have with your GP.

Time to get pushy with your GP receptionist! Sadly those that make the most noise do get heard first, including those using NHS services. So explain the situation and insist on an appointment date. Although if I was you (and given how long you've already waited), I think I would go for one of the urgent/same day type appointments this time around.

If you still get given the runaround, see if your area has a PALS service and ask them for advice. PALS stands for the Patient Liaison Service and can be very good at advocating when problems arise.

Good luck and let us know how you get on if you can.

Ps. gluten-free beer and bread do exist...there is hope!

[silvercue in reply to Regalbirdy]

Thanks.

As for those with the early stages.....I have had symptoms for over 20 years and just never done anything about it, but it is getting silly now!