Quality statement 4: Advice about a gluten-free diet

Quality statement

People newly diagnosed with coeliac disease discuss how to follow a gluten-free diet with a healthcare professional with specialist knowledge of coeliac disease.

Rationale

A gluten-free diet is the main treatment for coeliac disease. If people with coeliac disease do not follow a gluten-free diet they may experience continuing ill health and be at risk of serious long-term complications. Personalised information and advice about a gluten‑free diet from a healthcare professional with specialist knowledge of coeliac disease will help people to understand and self‑manage their condition.

Quality measures

Structure

Evidence of local arrangements to ensure that people newly diagnosed with coeliac disease discuss how to follow a gluten‑free diet with a healthcare professional with specialist knowledge of coeliac disease.

Data source: Local data collection.

Process

Proportion of people newly diagnosed with coeliac disease who discuss how to follow a gluten-free diet with a healthcare professional with specialist knowledge of coeliac disease.

Numerator – the number in the denominator who discuss how to follow a gluten-free diet with a healthcare professional with specialist knowledge of coeliac disease.

Denominator – the number of people newly diagnosed with coeliac disease.

Data source: Local data collection.

Outcome

a) Satisfaction among people with coeliac disease that they are supported to manage their condition.

Data source: Local data collection.

b) Health-related quality of life for people with coeliac disease.

Data source: Local data collection.

What the quality statement means for service providers, healthcare professionals and commissioners

Service providers (for example general practices, community healthcare providers and secondary care) ensure that processes are in place for people newly diagnosed with coeliac disease to discuss how to follow a gluten‑free diet with a healthcare professional with specialist knowledge of coeliac disease, such as a dietitian.

Healthcare professionals (such as consultants or GPs) ensure that people newly diagnosed with coeliac disease discuss how to follow a gluten‑free diet with a healthcare professional with specialist knowledge of coeliac disease, such as a dietitian.

Commissioners (such as clinical commissioning groups and NHS England) commission services that ensure that people newly diagnosed with coeliac disease discuss how to follow a gluten‑free diet with a healthcare professional with specialist knowledge of coeliac disease, such as a dietitian, and that services have sufficient capacity to meet demand.

What the quality statement means for patients and carers

People who have coeliac disease and their carers (if appropriate) discuss how to follow a gluten‑free diet with a healthcare professional with specialist knowledge of coeliac disease, such as a dietitian.

Source guidance

Definitions of terms used in this quality statement

Discussion about how to follow a gluten-free diet

Healthcare professionals should tell people about the importance of a gluten‑free diet and give them information to help them follow it, including:

  • information on which types of food contain gluten and suitable alternatives, including gluten‑free substitutes

  • information on which types of food are naturally gluten-free

  • explanations of food labelling

  • information sources about gluten‑free diets, recipe ideas and cookbooks

  • how to manage social situations, eating out and travelling away from home, including travel abroad

  • avoiding cross contamination in the home and minimising the risk of accidental gluten intake when eating out

  • the role of national and local coeliac support groups.

[Coeliac disease (NICE guideline NG20) recommendation 1.6.3 and expert opinion]

Equality and diversity considerations

Gluten‑free products are more expensive and are usually only available from larger retailers, making access more difficult for people on low incomes or with limited mobility. As coeliac disease can affect more than one member of a family it can also be an additional burden on the family budget. To address this, healthcare professionals should highlight if gluten-free food products are available on prescription to help people to maintain a gluten‑free diet.