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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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I’ve been a coeliac for 40 years and never been asked back for a check up!!
Mine has been checked every year as part of my thyroid function test.
I have coeliacs and I have a colonoscopy at least every 5 years. I am under a haematologist so bloods are checked regularly plus I have a B12 injection every 3 months 🙂
I was just diagnosed, had my endoscopy end of April and results from that and the bone density scan came a few weeks ago. I was automatically booked in for an appointment with my gastroenterologist 6months on from my initial visit. I understand this is to check how the diet is working.
I was diagnosed 20 years ago and I have never been invited for a check up. Definitely going to enquire about it now though.
I had annual check ups with gastroenterologist for first couple of years but opted out as everything was fine and I had other health issues. Then some 5 years later, out of the blue I received an appointment for September. It does not actually say its for a check up and there's no mention of a blood test!
I've never had a check up! Will be asking my Doc!
I've been diagnosed coeliac for 3 years now. I've never seen a gastroenterologist but I have annual blood tests and annual dietician appointments - dietician checks my BMI and requests the blood tests. Also got a letter from my GP this year saying I'm entitled to various vaccinations due to having coeliac so I got those too.
I get a yearly check, ttg levels and vit D are what I was told were the main checks. Last time i was told VitD was slightly low and white blood cells called Eosinophils were raised but nothing was followed up.
I was asked to come in for an annual check two months ago, for the first time in my ten years since being diagnosed with coeliac disease. When I asked the nurse about why I was being offered one now, she said "they" were trying to ensure annual checkups happened - I don't know if "they" referred to the local GP surgery or to the NHS as a whole.
My blood tests came back showing that I was Vitamin D deficient, B12 deficient and low in calcium. I'm on supplements and will be having another blood test in a couple of months time. I'm definitely glad I had it done or else I'd never have known about this.
Thank you for writing about this and encouraging other coeliacs to go for their annual check ups 🙂
I was diagnosed 24years ago. At that time I had a dexa scan and an appointment with a dietician but nothing ever since 🤦🏻♀️
My OH is the coeliac about 4 years now. Never been asked for a specific coeliac one but has his bloods tested regularly as. had severe iron deficiency which eventually led to his diagnosis from the cameras etc.
I got diagnosed in March 2018 after endoscopy. Had blood tests checking levels, B12 jabs and qualified for free flu and pneumonia jab. Hit normal bloods after about 4 months and had an appointment with the same gastroenterologist in February this year. He said I'd get an annual invitation for a check up as long as there were no other issues in between. Think it must vary by area (as many things do in the NHS). Probably a good idea to request an annual 'MOT' anyway for any health condition.
I have been coeliac and type 1 diabetic for 17 years. I go to the hospital for my diabetes but have never been asked by my GP for a coeliac check up. I live in the borough of Bromley
I attend a Dietetic Clinic at the Hospital which I was told was basically a Coeliac Clinic, there I see 2 people the first is a gastric nurse who checks how all is going and asks a zillion questions and other info then they sent me across to there own blood area where various bloods were done then to the dietician who checks how you are doing and checks if there is Anything you Are having issue with diet wise - mine is weight as since being strictly GF I’ve gained weight despite being extraordinarily careful and strict it may not be a lot in terms of weight but my other issues are happier with lower weight, I have just discovered that the dietician Has referred me to her other clinic so she can spend more time with me and see if she can help! So on the coeliac monitoring side that’s good my only issue is with the gastro team not being willing to accept that there is more going on but that’s another story.
Love the blog!
I used to have regular check ups from the age of 2-18 once I’d hit adulthood I was no longer under a dietitian. I have checkups but I wouldn’t say as often as annually- even with an underactive thyroid
I have annual bloods and a five yearly dexa bone scan, all arranged by my gp. I've lived in 4 parts of the country since diagnosis 16 years ago and this is the first place that has done this. Really helpful and reassuring.
When I was diagnosed [Wiltshire based hospital] I was told I would have an annual check through my GP. For the early years I was contacted. I have instigated some checks but nothing for over five years. I had a dexa scan about 10 years ago.
I've always had a checkup since I was diagnosed in 2011 BUT that may be because (at the time) I was asymptomatic so my body wasn't telling me that something was wrong until I ened up in the hospital with severe pneumonia and they realised I was severely anemic too. It was 12 very long days in the hospital until I was diagnosed with coeliac disease.
I work as a nurse in a local GP surgery and all our patients with coeliac disease get offered an annual review, however my daughter with coeliac disease is registered at a different local surgery and does not get regular checks- confusing !
I live in Southern Ireland and was diagnosed 2 years ago via blood tests and then a gastroscopy. The hospital had me back once for confirmation of the diagnosis, and that’s it! On hearing this my gp now does blood tests every 6 months and B12 injections every 3 months, with a Dexa scan annually. And I’m not a private patient!!!
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 àbout 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.