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The other week I posted on my Instagram account about how I had been invited by my doctors for an ‘annual check up’ because of my coeliac disease.
My coeliac disease, I might add, which I have was diagnosed with some 18 years ago and never heard from my doctors on it since.
So it’s no surprise that after this out-of-the-blue letter, loads of people were getting in touch and asking if they needed one too.
The letter from my GP came just before my birthday, informing me that I would need to book in for a blood test, as well as to check my height, weight and BMI.
This forms part of an annual check up for people with coeliac disease – something I’d never been invited to before.
It was really interesting to see the response on Instagram to this.
Loads of people asked if they should have one too, but equally quite a few people responded to say they had always had a regular check in with their GP.
There seems to be some discrepancy across the UK, with different GPs doing different things.
What is a coeliac check up?
Basically, a coeliac check up is a blood test. I asked what I was being tested for and the nurse reeled off a whole list.
This included checking the antibodies which highlight coeliac disease, as well as iron levels, B12, thyroid function, liver function, vitamin D and more.
Basically it seems like a full MOT. And I can understand this, as so many conditions are linked to coeliac disease, and it’s important to make sure nothing untoward is going on.
My bloods all came back fine (minus my thyroid one, but that’s a whole other story!).
So for me, it was nice to know I’m still on the right track. However, is this something I necessarily need each year? I did some digging to find out.
Do I need a coeliac check up?
According to Coeliac UK, anyone diagnosed with coeliac disease should have a regular check up – recommended annually – with a GP, nurse or gastroenterologist.
They recommend bloods are taken for the following:
- full blood count
- calcium
- ferritin
- folate
- vitamin B12
- coeliac disease antibodies
- thyroid function tests
- liver function tests
Coeliac UK also recommends your height and weight are reviewed, as well as your symptoms.
A chat about your diet is also helpful to ensure you don’t need any extra help from a dietician.
What if my GP hasn’t asked to see me?
If you haven’t had a coeliac check up and you’re concerned about it, you should speak to your GP.
The NHS website does state under the treatment of coeliac disease that after diagnosis: “Your GP will offer you an annual review during which your height and weight will be measured and your symptoms reviewed.
“They’ll also ask you about your diet and assess whether you need any further help or specialist nutritional advice.”
It might be that different NHS Trusts operate differently (that certainly seems to be the case) and your GP might be able to explain why you haven’t had one.
It’s also super important that if you ever have any problems, recurring symptoms, or further worries, it goes without saying you should contact your GP anyway.
Personally, I’m glad I had my coeliac check up, because it helped me discover my thyroid was going a bit bandy again.
It’s also a nice reassurance that I’m doing things right with my gluten free diet and that there are no further health complications.
It took literally two minutes of my day and I’ll definitely be booking back in when I get a reminder next year.
Do you have regular coeliac check ups?
I’d love to know if this is something you’ve been offered.
Have you always had an annual check up? Only been offered one recently? Or never had one at all?
Let me know in the comments – I’d be really interested to hear how different it is across the country!
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Never had a check up and been diagnosed for 10yrs
I had a dietician and couple of consultant reviews within the first 6 months but nothing since
Only check up I get is from the chemist once a year about my GF prescription and there they tick the box to get the doctor to arrange a blood test but it never happens and I always forget until the next year when they tick the box again
I live in Nottingham. Was diagnosed 5 years ago and am 55. (Only symptoms were mouth ulcers). I’ve not been invited for a check up and have never asked for one, but I will definitely investigate. Thanks for putting this out there!!! Really helpful to know about
I have yearly check up at hospital with dietician, they do mu bloods/weight etc. Although covid has delayed it but they said if I feel I need a blood test to check my iron or folic acid then I can get one done. I was diagnosed in 2018 and as my ttg was extremely high they’ve kept me under hospital care. Had a dexa scan shortly after diagnosis which showed osteopenia so I’’ll always have to take calcium tablets. I feel my care has been really good. Big up the Royal Bournemouth Hospital!
My daughter is going for regular checkups and blood tests. She was 4 years when she was diagnosed. She’s now 10 and going strong.
My consultant discharged me to my GP with advice to eat gf and take a multi vitamin as they felt my CD was under control. I have asked my gp about annual blood tests and 5 yr dexa scan. She said they dont bother unless there is an issue. She also told me that I’ve never had a dexa scan as there are no notes on file – I’ve had 2…
My daughter, also coeliac has previously had to have b12 injections but no follow up since. We currently cannot get to see a gp unless we list symptoms bordering on serious illness. Based in Staffordshire. Just doesnt fill you with confidence.
I was only diagnosed just over 3 years ago and they send me for annual blood tests with my GP and an appointment with my consultant at the hospital to discuss the results, checking on my diet to make sure I’m getting the right amount of vit D, calcium etc. I appreciate this as a women in my 40s with family history of thyroid problems as it keeps a check on this and other concerns such as osteoporosis etc
NHS Fife, my consultant is good but as for Coeliac checks even after being newly diagnosed 2018, I got the appointments and then it would. E changed to,3 months later then it would be cancelled then repeat! I had 1 appointment after diagnosis with the coeliac nurse team and none since. Despite struggling with the same pain they said would go once I was GF my bloods were of the chart co sultans never seen such a high level but by Xmas 2018 bloods were normal again to the shock of my consultant but I’ve been strict, no May contain and strict gf. Then I got a app during lockdown a video call, which happened to coincide with a outage in cell cover and wifi typical I called my consultant from a land line and let her know and was told no worries. 7 days later I got a letter saying in was discharged from the coeliac team, called my consultant again and she was confused then I heard again, as my bloods for coeliac had been fine and I knowingly missed a appointment which I only found out on the day when it wouldn’t connect and no mobile data either! That was still interpreted as a choice to non attendance! Since I’ve had no check ups and as for getting to se my gp forget it! I’ve dealt with the same dr for decades and we have had a fight together to get to this stage but his hands are tied because of new covid rules, now I’m on my own, can’t see my gp, no coeliac clinic or contact and ,y consultant has the same issues trying to see the backlog. All I know is my coeliac disease is under control but as for my other bloods zip, and since have developed a issue with my teeth and I’ve had no issues since brace work and surgery when I was 21, I’m now 46 and the only change Happened after coeliac diagnosis and gluten free diet and my dentist is concerned as I one of her 5 minute patents never a issue Ben paranoid about keeping teeth in good condition since a child being scare of my grams dentures! Worked a treat though I had the cleanest teeth as a child! We don’t know what’s going one but vitamin d and calcium I think may play a part but then I’m no specialist and no change to the pain, still in excruciating pain still throwing up still struggling and unlike others I’ve got weight stuck the worse my pain got the more weight stuck and I’m not a big eater and stick to what is safe and what I like, despite being sick loads weekly I loose not a pound and always bloated, each endoscopy they refuse to sedate me and get so far and I can’t cope with the pain of the scope inside and begins brittle asthmatic too doesn’t help to cope I hate shallow breath and they say breath normal how do you tell them you can’t or it’s hurts from the tube, they then misdiagnose despite my telling them before had what will happen and my consultant even noting I need to be sedated! There is no after care in nhs fife for coeliacs and it’s a fight to get any chronic medical issue looked after and no continuity in care and no where to turn.
Very interesting that the NHS states that we should be seen every year. Never been asked in by my GP for a follow up since I was diagnosed in 2003. The only contact I have had since diagnosis was a dietician’s appointment about 3 weeks later and they were more interested in explaining things to the student they had with them. Luckily, I can read.
Will contact my GP surgery and ask for an MOT if I can get them to answer the phone.
I’ve had annual checkups with an NHS dietitian at a local hospital for many years. The dietitian sends me an appointment letter together with blood tests forms to take to my GP and have done a few weeks before going to see her. Fortunately I’ve been seeing the same lady for a long time and we’ve built up a good rapport. As well as how I’m doing with a gluten free diet we discuss my blood test results and through those it was picked up that my ferritin (iron stores) level was consistently too low so I now take iron daily. For various reasons, including Coeliac, I have an increased risk for osteoporosis. The dietitian arranged my first DEXA (bone density) scan around 10 years ago. Four years ago a DEXA scan showed I had osteopenia (the stage before osteoporosis) and I now have scans every two years plus am prescribed combined vitamin D and calcium to take twice a day. I feel having a Coeliac check up each year is well worth having, especially if like me conditions are picked up and acted upon earlier than they may otherwise have been.
Thank you for this useful information. I was diagnosed à bout 18th months ago. Only saw a gastroenterologist when I had the endoscopy to confirm diagnosis of Coeliac disease, being followed up by at hospital and have blood test before.