Waiting times

[tinkerbell971]

I was referred to gastro last month after my blood test result was 128 so way out of the range. I have rang them today to be told there is a 28 WEEK awaiting time to be seen. That means I will not be seen until at least June. Surely it’s not safe to have a 28 week delay on diagnosis of coeliac??? Help what should I do?

[Cooper27]

6 month wait is pretty standard at the moment.

If it's any consolation, most people with coeliac disease typically go undiagnosed for 12 or so years, so on that basis, another 6 months isn't going to do that much more harm.

With a result of over 100 though, most doctors actually say it's not necessary to do the biopsy at all. There's no chance a result that high is a false positive (according to the gastroenterologist my OH saw). If you don't wish to wait 6 months, you can discuss with your doctor whether they are happy for you to be diagnosed now, based on blood test along. Otherwise, take the time just now to enjoy some of the foods you'll miss and to maybe squeeze in a holiday where you don't need to worry about finding gluten free restaurants

[tinkerbell971 in reply to Cooper27]

Thank you. I didn’t realise the waiting time was so long but it doesn’t surprise me! I think I’m just going to enjoy eating everything for now while I can as it will massively change my life when I have to eat gluten free.

[Cooper27 in reply to tinkerbell971]

To be honest, the wait can be a blessing in some ways, because by the time your biopsy rolls round, you'll be so fed up of Krispy Kremes, you'll be put off them for life anyway!

[Regalbirdy]

Being prepared to travel to a hospital further away in England cut my waiting time in half.

It might be worth asking your GP if this method would work for you too?

[tinkerbell971 in reply to Regalbirdy]

Oh fab I will check

[alouh]

I went private with the help of family members contributing but I realise that is not a possibility for everybody. Thing is I was so ill by the time the endoscopy was booked I couldn’t stand or talk and I was always freezing cold- another couple months and I would be in hospital on a drip for sure. The waits are so frustrating because it can literally be life threatening and you’re expected to wait half a year for treatment.

[Hidden]

I just had gastro appointment yesterday after referral in August. I was told waiting was up to 8 mths in my area.

I phoned my GP who sent an expediation request. They received that, but still no appointment on horizon. Gastro told me to just keep contacting for an appointent/cancellation which eventually got.

You need to ask your GP to expediate this, and then contact them for appointment/cancellation. Gastro has longest waiting times. It's pretty shocking.

You could also look into private appointment for biopsy if you can afford that/have insurance.

Good luck.