What is a ‘coeliac check up’ – and do I need one?

coeliac annual check up the gluten free blogger 1

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.

coeliac annual check up the gluten free blogger 2

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.

coeliac annual check up the gluten free blogger 1

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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  1. Lin cosens
    July 9, 2019 / 18:33

    I’ve been a coeliac for 40 years and never been asked back for a check up!!

  2. Steve Robinson
    July 9, 2019 / 19:05

    Mine has been checked every year as part of my thyroid function test.

  3. KT
    July 9, 2019 / 19:14

    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 🙂

  4. H
    July 9, 2019 / 19:46

    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.

  5. Gemma-Rose
    July 9, 2019 / 19:54

    I was diagnosed 20 years ago and I have never been invited for a check up. Definitely going to enquire about it now though.

  6. Lesley
    July 10, 2019 / 08:17

    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!

  7. Erin
    July 10, 2019 / 11:55

    I’ve never had a check up! Will be asking my Doc!

  8. Anna
    July 10, 2019 / 13:27

    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.

  9. Paul Day
    July 12, 2019 / 16:37

    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.

  10. fiandjonny
    July 13, 2019 / 12:48

    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 🙂

  11. Kathy
    July 14, 2019 / 18:43

    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.

  12. Alison
    July 15, 2019 / 14:44

    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.

  13. Sam Barnett
    July 31, 2019 / 15:29

    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

  14. October 27, 2019 / 19:48

    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!

  15. Sophie
    February 24, 2020 / 10:28

    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

  16. Kristin
    February 24, 2020 / 13:04

    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.

  17. lkjkl
    July 29, 2020 / 17:28

    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.

  18. Carmen M. Mangion
    September 12, 2020 / 10:05

    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.

  19. Kate Mitson
    September 28, 2020 / 10:10

    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 !

  20. Valerie Elsegood
    September 28, 2020 / 13:58

    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!!!

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