The British Society of Gastroenterology (BSG) recommends people with coeliac disease should receive regular follow in the first two years after diagnosis to monitor and support people with the gluten free diet. Follow up should be carried out by physicians and specialist dietitians with expertise in coeliac disease. If access to a specialist dietitian is limited, follow up should be provided by gastroenterologist and/or primary care clinicians with experience in coeliac disease.
What should follow up look like?
- Monitoring symptoms and assessing adherence to the gluten free diet.
- Patients should be assessed and monitored for deficiencies in iron, folate, vitamin B12, vitamin D and calcium at diagnosis and during follow up. Supplementation should be in line with general guidance.
- Vitamin B6, magnesium and zinc should be monitored in cases of severe malabsorption.
- Liver function tests should be checked at diagnosis and during follow up.
- Check thyroid function at diagnosis and afterwards if clinical suspicion.
- Physical and psychological wellbeing should be assessed. All patients should be directed towards an advocacy group, where they can join online communities, attend local groups and receive peer support which may positively impact adherence and psychological wellbeing.
- Adults should have a DXA scan one year after adopting a gluten free diet.
NICE also provides recommendations for monitoring people with coeliac disease:
- Measure weight and height.
- Review symptoms.
- Decide on the need to complete a full diet assessment and adherence to the gluten free diet.
- Decide on the need for referral to specialist dietitian for nutritional advice.
The NICE quality standard on coeliac disease also highlights that patients living in socioeconomically deprived areas are less likely to attend an annual review and that healthcare professionals should therefore agree a local approach to encourage as many people as possible to attend.
Review appointment checklist
When patients attend for their follow up appointment they often return with lots of questions about their new diet and lifestyle. Our annual review checklist has been developed with NHS dietitians specialising in coeliac disease. The checklist covers the key areas to consider during a review and signposts to further Coeliac UK resources to support you and your patients.
Long term follow up
Following the initial follow up period, people who have demonstrated good clinical response and adjusted well to the gluten free diet may be considered for patient initiated follow up. Patients will be able to request follow up appointments based on individual need rather than routine schedules appointments and should receive instructions on how to request an appointment if needed.
Long term follow up is recommended for people who are poorly adherent to the gluten free diet, at risk of poor adherence, have not responded to the gluten free diet, or have developed complications associated with coeliac disease.
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. A validated 5-point score, outlined in the BSG guidance, can help determine the risk of persistent villous atrophy and help decide the need for a repeat biopsy.
Ongoing symptoms
If your patient still has ongoing symptoms you can find out more information here.
Further information on non-responsive and refractory coeliac disease, including information about support available from specialist centres is available on our website.