Quality statement 1: Serological testing for coeliac disease

Quality statement

People at increased risk or with symptoms of coeliac disease are offered a serological test for coeliac disease.

Rationale

Coeliac disease is currently underdiagnosed. If coeliac disease is not recognised, there is a risk of complications, unnecessary investigations and a poor quality of life. Offering serological testing when there is a new diagnosis for a condition that increases the risk of having coeliac disease or at presentation of symptoms of coeliac disease will improve detection and diagnosis, thereby enabling people to begin treatment.

Quality measures

Structure

Evidence of local arrangements to undertake serological testing for people identified with increased risk or symptoms of coeliac disease.

Data source: Local data collection.

Process

a) Proportion of people at increased risk of coeliac disease who receive a serological test for coeliac disease.

Numerator – the number in the denominator who receive a serological test for coeliac disease.

Denominator – the number of people at increased risk of coeliac disease (people with type 1 diabetes or autoimmune thyroid disease at diagnosis, and first-degree relatives of people newly diagnosed with coeliac disease).

Data source: Local data collection. The Royal College of Paediatrics and Child Health National Paediatric Diabetes Audit collects data on coeliac disease screening in children and young people with type 1 diabetes.

b) Proportion of people with symptoms of coeliac disease who receive a serological test for coeliac disease.

Numerator – the number in the denominator who receive a serological test for coeliac disease.

Denominator – the number of people who have symptoms of coeliac disease.

Data source: Local data collection. To aid practicality of measurement, service providers and commissioners could focus on people presenting with symptoms of irritable bowel syndrome.

Outcome

Diagnosed prevalence of 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 they take a case‑finding approach to identifying coeliac disease by offering a serological test to people at increased risk or with symptoms of coeliac disease. Providers should ensure that tests for coeliac disease are only carried out when a gluten‑containing diet has been followed for at least 6 weeks.

Healthcare professionals (such as GPs and consultants) offer a serological test for coeliac disease to people at increased risk or with symptoms of coeliac disease, and ensure that people have been following a gluten‑containing diet for at least 6 weeks before the test.

Commissioners (such as clinical commissioning groups and NHS England) commission services that take a case‑finding approach to identifying coeliac disease by offering a serological test to people at increased risk or with symptoms of coeliac disease; and ensure that they commission a pathology service that has access to the serological tests for coeliac disease.

What the quality statement means for patients and carers

People who may have, or who are at risk of developing, coeliac disease are offered a blood test to check for the disease. It is important to diagnose coeliac disease because it can cause long-term health problems if it is not treated. Before having the test, people need to follow a diet that includes foods that contain gluten for at least 6 weeks.

Source guidance

Definitions of terms used in this quality statement

People at increased risk or with symptoms of coeliac disease

A serological test for coeliac disease should be offered to:

  • people with any of the following:

    • persistent unexplained abdominal or gastrointestinal symptoms

    • faltering growth

    • prolonged fatigue

    • unexpected weight loss

    • severe or persistent mouth ulcers

    • unexplained iron, vitamin B12 or folate deficiency

    • type 1 diabetes, at diagnosis

    • autoimmune thyroid disease, at diagnosis

  • adults who meet the irritable bowel syndrome diagnostic criteria

  • first-degree relatives of people newly diagnosed with coeliac disease.

    [Coeliac disease (NICE guideline NG20) recommendation 1.1.1 and Irritable bowel syndrome in adults (NICE guideline CG61) recommendation 1.1.2.1]

Serological test for coeliac disease

When healthcare professionals request serological tests to investigate suspected coeliac disease in children, young people and adults, laboratories should test for total immunoglobulin A (IgA) and IgA tissue transglutaminase (tTG) as the first choice. In young people and adults, laboratories should use lgA endomysial antibodies (EMA) if lgA tTG is weakly positive and should consider using lgG EMA, lgG DGP or lgG tTG if lgA is deficient. A serological test for coeliac disease is only accurate if a gluten-containing diet has been followed for at least 6 weeks.
[Adapted from Coeliac disease (NICE guideline NG20) recommendations 1.1.3, 1.2.2 and 1.2.3]