How should I counsel patients on the long-term management of Celiac disease, particularly regarding dietary restrictions?

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 ². A healthcare professional with specialist knowledge should explain the importance of this diet and provide information to help patients follow it ¹. Strict adherence is crucial for controlling symptoms, improving quality of life, and reducing the risk of complications, including lymphoma ².
• Understanding Gluten-Containing Foods and Alternatives: Patients need information on which types of food contain gluten and suitable gluten-free alternatives ¹. 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 ². 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) ².
• 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 ².
• 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 ¹,². A small proportion (about 5%) may develop symptoms with uncontaminated oats ². Products with oats must be labelled 'contains oat gluten' ².
• Managing Social Situations and Cross-Contamination: Provide advice on how to manage social situations, eating out, and travelling, including abroad ¹. Patients should be counselled on avoiding cross-contamination in the home and minimising the risk of accidental gluten intake when eating out ¹.
• Nutritional Considerations and Supplements: Advise patients to seek advice from their healthcare team before taking over-the-counter vitamin or mineral supplements ¹. Explain that specific supplements like calcium or vitamin D may be needed if dietary intake is insufficient ¹. Routine supplementation to prevent deficiencies is not recommended, but assessment for deficiencies in iron, folic acid, calcium, and vitamin D is important ². 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 ².
• Long-Term Monitoring and Dietitian Involvement: Patients with confirmed coeliac disease should be reviewed at least annually in primary care ². Annual reviews should include measuring weight and height, reviewing symptoms, and assessing diet and adherence to the gluten-free diet ¹. 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 ². Coeliac serology can help assess adherence, but should not be used alone to determine gluten exclusion ¹,².
• Information and Support: Provide information on national and local coeliac support groups, such as Coeliac UK, which offers a helpline and various information leaflets ¹,². The NHS also provides relevant information leaflets ².
• Associated Health Issues: Be aware that people with coeliac disease may experience anxiety and depression, and these should be diagnosed and managed appropriately ¹,². Advise on recommended immunisations, such as pneumococcal vaccination, as per the Department of Health's Green Book ¹,². For women who are pregnant or planning pregnancy, strict adherence to a gluten-free diet is important to minimise pregnancy complications ².