routine blood tests - coeliac?

[sleepster]

Hello, I'm just wondering what other people's experiences with coeliac testing are.
I'm pretty sure I've always been tested for coeliac disease on a yearly basis, either at the (hospital) diabetes clinic or at my GPs yearly diabetes check up, I'm not sure when it was last done as I changed hospitals in 2020 and also changed my GP last month, since then I have lost access to my online test results
Today when I went for my pre-consultation appointment at the hospital I asked if it was being done and was told no, it's not a routine blood test and it has to be requested by the doctor.
Do you get tested for it?

 

[AndBreathe]

I'm not T1, but have only ever been tested when the Endo specifically asked for it as part of a very comprehensive panel of autoimmune conditions. I wasn't there to consult about diabetes.

I understand that those living with T1 should be tested annually for autoimmune thyroid disease.

There are a LOT of potential autoimmune conditions, so I guess it is unrealistic to test for them all. Thyroid disease is very common, per population, with increased chances of autoimmune thyroid disorders in those living with T1, so I'm guessing that it's something of a low hanging fruit.

 

[Rokaab]

I never got tested for it all at, until I was ill in hospital with a very bad case of gastroenteritis and my parents were pushing for tests to see why I'd been losing weight for a good while (we're talking years here btw)- at which point they found it, if it had been a normal yearly test I suspect it would've been picked up a good few years before I found out (5ish I reckon)

 

[Antje77]

I don't think I've ever been tested for coeliac, it's definitely not a part of the routine T1 blood tests in the Netherlands.
I also don't have any symptoms associated with coeliac desease so I wouldnt think it worth testing for it.
If you have any symptoms, by all means ask to be tested, coeliac is more common in T1's than in the general population I think.

 

[becca59]

Yes was tested on diagnosis. Again year before last with a tube down throat following stomach issues. It is not a regular test though.

 

[sleepster]

Thanks everyone, I guess I'm just a bit confused about why I had been tested yearly previously if it's not a routine test. This hospital is one I had attended as a child/"young adult" as well and was definitely tested yearly then as they told me I had the antibodies for coeliac.

There are a LOT of potential autoimmune conditions, so I guess it is unrealistic to test for them all. Thyroid disease is very common, per population, with increased chances of autoimmune thyroid disorders in those living with T1, so I'm guessing that it's something of a low hanging fruit.

I'm not suggesting anyone should be tested for them all, I wouldn't ever expect that, however I do have hypothyroidism and they still test me for hypothyroidism My hypothyroidism was diagnosed by my GP and all testing and dosing is dealt with by them so really no need to test me at the hospital.

 

[dancer]

Some hospitals routinely test for coeliac disease at the annual review but my hospital only started this in 2015 which is when I was diagnosed. It was only then that I found out that around 1% of the population is coeliac but around 10% of Type 1 diabetics test positive for it. They have known about this connection between Type1 and coeliac disease since the 1960s, so every T1 should be tested regularly. Not everyone has symptoms but my consultant told me that coeliacs who continue to eat gluten could get a couple of nasty cancers (his words). Google told me that one of these is oesophageal cancer.