Dr Kola Tytler MBBS CertHE MBA MRCGPClinical Lead • iatroX
For the long-term management of coeliac disease, particularly regarding dietary restrictions, patients should be counselled on the following key areas:
- Strict Gluten-Free Diet (GFD): The only effective treatment for coeliac disease is long-term adherence to a strict gluten-free diet NICE CKS. A healthcare professional with specialist knowledge should explain the importance of this diet and provide information to help patients follow it NICE NG20. Strict adherence is crucial for controlling symptoms, improving quality of life, and reducing the risk of complications, including lymphoma NICE CKS.
- Understanding Gluten-Containing Foods and Alternatives: Patients need information on which types of food contain gluten and suitable gluten-free alternatives NICE NG20. This includes avoiding foods based on wheat (and varieties like spelt, kamut, semolina, triticale), barley, and rye, such as breakfast cereals, bread, flour, pasta, cakes, pastries, and biscuits NICE CKS. They should also be aware of foods containing wheat, barley, or rye as fillers or flavouring (e.g., sausages, ready meals, soups, sauces), and items that can be cross-contaminated during processing or cooking (e.g., oats, items fried in the same oil as gluten-containing food, most beers containing malt) NICE CKS.
- Food Labelling: Emphasise the importance of reading food labels to check if products are suitable, as manufacturers are legally required to list any gluten-containing ingredients NICE CKS.
- Gluten-Free Oats: Patients can choose to include pure, uncontaminated gluten-free oats in their diet at any stage, but their response should be monitored regularly NICE NG20,NICE CKS. A small proportion (about 5%) may develop symptoms with uncontaminated oats NICE CKS. Products with oats must be labelled 'contains oat gluten' NICE CKS.
- Managing Social Situations and Cross-Contamination: Provide advice on how to manage social situations, eating out, and travelling, including abroad NICE NG20. Patients should be counselled on avoiding cross-contamination in the home and minimising the risk of accidental gluten intake when eating out NICE NG20.
- Nutritional Considerations and Supplements: Advise patients to seek advice from their healthcare team before taking over-the-counter vitamin or mineral supplements NICE NG20. Explain that specific supplements like calcium or vitamin D may be needed if dietary intake is insufficient NICE NG20. Routine supplementation to prevent deficiencies is not recommended, but assessment for deficiencies in iron, folic acid, calcium, and vitamin D is important NICE CKS. Be aware that gluten-free diets can be low in fibre, thiamine, folate, vitamin A, magnesium, calcium, and iron, and some commercial gluten-free products can be hypercaloric, leading to excessive weight gain NICE CKS.
- Long-Term Monitoring and Dietitian Involvement: Patients with confirmed coeliac disease should be reviewed at least annually in primary care NICE CKS. Annual reviews should include measuring weight and height, reviewing symptoms, and assessing diet and adherence to the gluten-free diet NICE NG20. Referral to a dietitian is recommended if there are concerns about intentional or inadvertent gluten exposure, unexplained persistent symptoms, or suspected nutritional deficiencies or growth impairment NICE CKS. Coeliac serology can help assess adherence, but should not be used alone to determine gluten exclusion NICE NG20,NICE CKS.
- Information and Support: Provide information on national and local coeliac support groups, such as Coeliac UK, which offers a helpline and various information leaflets NICE NG20,NICE CKS. The NHS also provides relevant information leaflets NICE CKS.
- Associated Health Issues: Be aware that people with coeliac disease may experience anxiety and depression, and these should be diagnosed and managed appropriately NICE NG20,NICE CKS. Advise on recommended immunisations, such as pneumococcal vaccination, as per the Department of Health's Green Book NICE NG20,NICE CKS. For women who are pregnant or planning pregnancy, strict adherence to a gluten-free diet is important to minimise pregnancy complications NICE CKS.