The British Society of Gastroenterology (BSG) recommends regular follow up for all patients for up to two years after diagnosis, to monitor and support individuals transitioning onto a gluten free diet.  

Follow up should be provided by physicians and specialist dietitians with expertise in coeliac disease. Where access to specialist dietitians is limited, patients should be followed up by gastroenterologists and/or primary care clinicians with experience in coeliac disease, where possible.

What should follow up look like? 

• Review your symptoms and receive support with the gluten free diet.  

• Assess and monitor for deficiencies in iron, folate, vitamin B12, vitamin D and calcium. 

• In some cases, vitamin B6, magnesium and zinc should be monitored. 

• Liver function tests. 

• Thyroid function tests.  

• Adults should have a Dual-energy X-ray Absorptiometry (DEXA) scan around one year after starting the gluten free diet.  

• Physical and psychological wellbeing should be assessed.  

• Signposted towards an advocacy group, to join online communities, attend local groups and receive peer support.
  
  

Long term follow up  

Adult patients who have adjusted to the gluten free diet and have demonstrated a good clinical response may be considered for patient initiated follow up (PIFU), whereby patients request follow up appointments based on individual need, rather than attending routinely scheduled clinics. Patients should receive instructions on how to request an appointment if needed. 

Longer term regular follow up may be needed for certain patient groups including those who are poorly adherent to the gluten free diet (or are at risk of poor adherence), have not responded well to a gluten free diet, or have developed complications associated with coeliac disease. 

The decision on the need and type of long term follow up care, including whether to have a repeat biopsy, should be discussed and agreed between the patient and clinician. 

If you are experiencing persistent or recurrent symptoms which you think are linked to your coeliac disease, feel persistently run down or are struggling with your gluten free diet, please speak with your local healthcare team for a review. This is what is known as patient initiated follow up (PIFU). 

National Institute for Health and Care Excellence (NICE) also provides recommendations for monitoring people with coeliac disease.

During a review: 

• Your weight and height measured 

• Your symptoms reviewed 

• Your diet and adherence to the gluten free diet assessed and the need for specialist diet and nutrition advice considered 

If there are any concerns raised in your review, then you should be referred to a specialist for further assessment. The specialist will consider the need for any follow up blood tests, a bone scan to test for osteoporosis and the risk of long term complications and other conditions.  

Reviews can be carried out by your GP if they have a good understanding of coeliac disease, or it may be your gastroenterologist, specialist nurse or dietitian. If you live in Scotland and are over 16 years old, you’ll be offered an annual health check by your community pharmacy through the Gluten Free Food Service.

Monitoring coeliac disease in children 

The British Society of Paediatric Gastroenterology, Hepatology and Nutrition (BSPGHAN) recommends that children should have ongoing monitoring with an experienced paediatric dietitian and gastroenterologist. 

Children should be followed up six to 12 months after diagnosis and should receive a yearly check-up after this. This should include an antibody blood test every year or less often. 

Children should also have their height and weight checked to monitor their growth and development. 

If you or your child’s symptoms have not improved or have got worse since following the gluten free diet, speak to your healthcare team.