Support for celiac disease on the NHS

[nb888]

Hi there

I was diagnosed celiac in around Mar 2020 just before the pandemic.

Under the NHS system I would be eligible for annual blood tests, help on managing and dealing with any ongoing symptoms, together with periodic outpatient follow up "support" appointments, amongst a few other things.

To cut a long story short these have not really taken place as they should have,  no doubt partly due to the pandemic. Now as we are moving toward hopefully normal times I am still not really receiving the right support and whilst I am spending a lot of time off my own back researching various dietry issues /  symptoms / complications that I have been experiencing, which is fine, there feels to have been little to no support network of professional resource available to assist with this. Whilst I appreciate the NHS cannot and may not be able or required to provide this, the overall experience from my point of view, especially medical expertise to help "fill the gaps" over the last 2 years has not been great, so I have started to consider whether there are any private options. It doesn't help that my GP practice is rated one of the worst in the area but that is another story. I am not especially well off financially but would be ok with spending some money to try and get a better standard of ongoing support and "go to" if something like this is available.

I was wondering if anyone with Celiac disease in the UK has gone private and if so any experiences good / bad, would you recommend doing this or not? I am not really sure what outcome I am ultimately looking for, but just a feeling that there is a better professional support network available would be a nice start.

[Scott Adams]

Welcome to the forum!

Unfortunately your story sounds a lot like the follow up care that those with celiac disease here in the USA receive--which in many cases, including in my case, has been slim to none. Any follow up tests I received, for example I have gotten follow up blood tests to make sure that my tTG antibody levels went back to normal, have only occurred after having to more or less twist my doctor's arm, and this is true even having what is considered to be very good private insurance.

The fact is, most doctors may feel that once you are diagnosed and they tell you to go gluten-free, you're on your own. 

I still think that it's worth going the arm twisting route first, before spending money on it. Also, there are mail order blood tests for around $100 that can give you your antibody levels, which may help you determine whether or not you've been keeping 100% gluten-free.

I never received a follow endoscopy either, and I did have pretty severe villous atrophy. 

I hope you can get the follow up care promised, but paying for an endoscopy out of pocket would be quite expensive. Are you still having symptoms/issues?