Anyone In England?

[eml78]

Hi

I was just curious if anyone in England has had blood testing for Celiacs/Coeliacs... I was curious about the time frame it took you to get results? I am not from England/have not lived here long... and don't know what to expect as far as timing for results. Medical care here is quite different than what I am used to 

 

Thank you!!

[KCG91]

Hey there,

 

It takes a few weeks for the results to come back - three or maybe four when I had mine back. Sort out with your GP whether you need to call them for the results or they'll call you. I'd suggest getting a printed copy of all your blood tests as otherwise they'll probably just tell you yes or no. 

[eml78]

Thank you   I was really hoping since it took soooo long for me to FIND a place to get my 4 year olds blood tested (which I still don't understand) that I wasn't going to have to wait a long time. But I had a feeling I was.... Thank you again!

 

Also, could you tell me if its the "gold standard" in England to have to get the biopsy if the blood test is positive, like it is in the USA?

[KCG91]

Yeah, I think the test itself takes slightly longer than say, blood iron, because I had both on the same day and the iron came back much faster. Your GP should be able to tell you

I'm from England but I'm studying in Scotland at the moment and I know that in both places the assumption is your GP tests you, then sends you to a gastroenterologist who sorts out biopsies etc. and this is the 'gold standard'. However it depends what you want that for I think...

 

Personally, I've decided not to have the biopsy. My blood test results were so high with no other explanation (eg. thyroid) that my GP was happy to prescribe me gluten free food on that basis, for example. I also live away from home at the moment and am too coward to have it done without my mum to look after me It also took me just over two months from my GP making the referral to the date of the appointment with the GI and I just couldn't face the thought of continuing to eat something that was so damaging for those two months and then probably a few more waiting for the biopsy (I'm a final year university student so I already have a lot on this year!) Finally, when I go home to England they always want to repeat any tests because medical records aren't shared across the border, so I didn't see the point in getting it done now, only to probably have to do a gluten challenge and another biopsy when I went home. 

 

Sorry, bit of a ramble but hopefully it gives you an idea of how things work. I'm not trying to put you off a biopsy either!! Just explaining my experience of the whole process. I've heard that sometimes schools might want it in order to deal with a special diet so maybe worth checking that out. I have my gastroenterologist appointment on Wednesday and I'm sure we'll talk about biopsies/the gold standard so I'll let you know. Where are you in the UK - why did it take so long to find somewhere to get tested? 

 

[eml78]

I would be curious what they tell you about the biopsy. I would just rather NOT have my daughter have it (pretty sure the blood test is going to come back positive - I had her do the at home biocard test before I even went to the GP) But I want an "official" diagnosis that I can carry back to America with us when we go back at some point and I don't know if that will happen with no biopsy results :-(

 

We are much farther south than you - almost to London   Apparently labs in England don't routinely test children. They all acted shocked when I was there for my 4 year olds blood to be drawn. (Just not what I am used to...)

[KCG91]

Ahh I see, I guess it depends then what is accepted in America and the UK. I'll let you know how I get on I did read somewhere that new guidelines are being introduced for diagnosing children, especially if the blood count is over 100u/ml (I'm talking about ttg IgA antibodies there, I don't know anything about the others) but I can't remember where I saw that, which is frustrating. I think it had to do with a genetic test, a blood test, having symptoms and the symptoms responding to a gluten-free diet.

I am from Cambridge originally so used to being down South haha! I have a friend who wasn't diagnosed until he was 14 but seems to remember being sick all his life until then so it wouldn't surprise me for you to get that reaction! A lot of my friends here are medical students and I do think that they're being better trained now - I was turned away by two older doctors and then went to a young locum by chance who tested for it automatically because I was having tummy troubles. AND I WANT TO HUG HIM haha. 

[Chrisz1000]

I'm in Yorkshire and have found that it depends whether you can find a GP who has knowledge of this disease.

 

I stroll into my GP not knowing what is going on with my body, he suggests Coeliac (spelling it the UK way!); schedules a blood test and sends me on my way 7 days later the bloods are taken and 7 days after that I have the results and am discussing them with the sameGP.

 

They're Negative - "so you don't have coeliac". "errrm, well is that for certain? Do I need an endoscopy to confirm?"

 

He said no, thats final. If the bloods are clear you don't have coeliac disease... somewhat dismayed and none-the-wiser as to what it is that is slowly stripping my body fat, muscle and mental capacity, I visit the NHS website, clicking the Coeliac section it says blood test first then endoscopy etc. It also says the blood test is not always positive and if symptoms continue with a negative reading to go for an endoscopy.

 

So the exact opposite of what the NHS GP said! Great!

 

I went back and demanded a consultation with a gastroentorologist. The GP scheduled one for 8 weeks away - when the day eventually came it became evident the GP had referred me to a Surgical Colon unit - nothing to do with Gastroentorolgy!!

 

The lack of Coeliac knowledge at my GP surgery was stunning and greatly extended the time it took for me to get the correct testing. All that was back in March. I had my endoscopy 2 weeks ago and results are due this Friday where I have another Gastro consultation to discuss the results. Magic.