A new guideline from the PCSG should help the primary care team to identify, treat, and manage coeliac disease more effectively, as highlighted by Dr Sohail Butt
  • One in 100 people in the general population may have coeliac disease
  • GPs are often the first point of contact
  • Coeliac disease can be easily missed/misdiagnosed
  • Initial assessment is with EMA or TTG
  • Confirmation of diagnosis should be with intestinal biopsy
  • A gluten-free diet is the cornerstone of management
  • Follow-up visits improve compliance to diet

In May 2006, the Primary Care Society for Gastroenterology (PCSG) produced an updated guideline The management of adults with coeliac disease in primary care.1 This combines and supersedes two earlier guidelines on coeliac disease2,3 that were previously available on the PCSG website: www.pcsg.org.uk.

Since these earlier guidelines were published, there have been a large number of studies, which have led to further knowledge in the areas of epidemiology, clinical features, diagnosis, and management of the disease.

The PCSG has graded the recommendations in the guideline based on the quality of the supporting evidence, as shown in Box 1.

Box 1: Grading of recommendations in PCSG coeliac disease guideline

The strength of these recommendations is based on the quality of supporting evidence:

A – evidence from randomised controlled trials
B – evidence from other controlled or quasi-experimental studies
C – evidence from descriptive studies
D – expert opinion and clinical experience

Reproduced with kind permission from the Primary Care Society for Gastroenterology

Why the guideline is important

Some serological studies suggest that the prevalence of coeliac disease may be as high as one in 100 of the general population.4 The majority of these people are not diagnosed and may have atypical symptoms. At present experts estimate that there are approximately 125,000 people in the UK who have been diagnosed with coeliac disease, and the number of people being diagnosed has increased significantly over recent years.5

GPs are often the first point of contact for people who have developed suggestive symptoms. Many adult patients have minimal or atypical symptoms, such as anaemia and chronic fatigue, and unless the diagnosis of coeliac disease is considered, it can be easily missed or misdiagnosed in primary care.6,7

Practice-based commissioning (PBC) may encourage GPs and the primary care team to play a larger part in the diagnosis and ongoing management of those people diagnosed with coeliac disease. This will be instead of paying for gastroenterology outpatient appointment attendance.

Diagnosing coeliac disease

The guideline details possible symptoms of coeliac disease that patients may present with (Box 2).

Every day, GPs see a large number of people with non-specific symptoms and un-differentiated illness. It is helpful for GPs to be aware of the diverse ways in which coeliac disease can present, so that they can suitably assess people who have suggestive symptoms.

The guideline informs us that the best way to initially assess people with symptoms suggestive of coeliac disease is with serological tests. These serological tests are usually the endomysium antibody test (EMA) or the tissue transglutaminase test (TTG), the choice of which will largely be determined by your local laboratory services. Most laboratories are changing to TTG as it is a sensitive and specific test, which is relatively cost-effective.

The guideline says EMA is the initial screening test of choice but it may be negative in 2% of cases. In this situation it is sensible to test the IgA level as well. The guideline suggests that GPs should refer positive EMA tests to a gastroenterologist for intestinal biopsy.

The diagnosis is confirmed by histological changes found on an intestinal biopsy, and a positive response to a gluten-free diet.

Box 2: Symptoms of coeliac disease

Coeliac disease should be considered in patients presenting with:

  • Iron or folate deficiency anaemia
  • Tired all the time (TATT) or chronic fatigue
  • Unexplained diarrhoea
  • Abnormal levels of dental decay
  • Persistent mouth ulcers

And particularly if the patient also has:

  • A family history of coeliac disease
  • Type 1 diabetes
  • Autoimmune thyroid disease
  • Osteoporosis
  • Infertility
  • Unexplained neurological disease
Reproduced with kind permission from the Primary Care Society for Gastroenterology

Managing patients in primary care

The guideline confirms that a gluten-free diet is the cornerstone of management as it improves symptoms and reduces the risks of complications (Grade C). Serological tests can be used to monitor dietary adherence (Grade C), and regular follow-up visits help patients keep to their gluten-free diet (Grade C). Coeliac patients often have a nutritionally deficient diet. Input from a dietitian may, therefore, be beneficial, particularly when a person is first diagnosed.

Historically, most patients have been followed-up in hospital-based gastroenterology clinics, or alternatively they may have lapsed from follow-up completely. Practice-based commissioning is likely to drive GPs to organise follow-up in primary care. The guidance neatly sets out the annual assessments that should be carried out (e.g. weight, height, body mass index), and suggests roles for GPs, practice nurses, the dietitian, and the pharmacist.

Most GPs are unsure how much gluten-free food to prescribe for a newly diagnosed patient. The guideline includes a guide to indicate the correct monthly amount of food to prescribe, which is based on the dietetic principles of recommended daily allowances for the different age groups and genders. The guidance also discusses the extra amounts needed when pregnant/breastfeeding, and for those people with a high level of physical activity. This guideline may be a good starting point to ensure you have cost-effective prescribing with respect to gluten-free foods.

Patients with coeliac disease have been found to have an increased risk of developing osteoporosis.8 The guidance recommends that patients' bone mineral density should be measured using dual X-ray absorptiometry (DEXA) at the time of diagnosis. The test should then be repeated:

  • at the menopause for women
  • at the age of 55 years for men
  • at any age should a fragility fracture occur.

From the PBC perspective, the guideline sets out some helpful criteria for when patients should be referred back to secondary care. Referral back to a gastroenterologist should be considered if there is:

  • poor response to the gluten-free diet
  • weight loss on a gluten-free diet
  • blood in the stools
  • onset of unexplained abdominal pain
  • abnormalities in blood results
  • other clinical concerns.


The number of people with coeliac disease is increasing. The average practice of 6000 patients will have 12 patients who have been diagnosed with the condition, but may have a further 48 people who will be diagnosed in the future. This is calculated on the basis of one in 100 patients having a positive serology test, i.e. 60 patients in a practice of 6000. It is also estimated that one in 500 patients are currently known to have coeliac diseae, which equates to 12 patients in the average practice and, therefore, a further 48 who have not been diagnosed.

Recent advances in our knowledge of the diagnosis and management of coeliac disease have clarified clinical management and potential care pathways.

Once diagnosed and stable, most people with coeliac disease can be managed by the wider primary healthcare team who will provide appropriate care and support to maximise their wellbeing.

The full guideline can be downloaded from the PCSG website: www.pcsg.org.uk.

Action points

  • Identify all patients diagnosed as coeliac — How does this number compare with the predicted incidence of 1:100? (NB: Searching for gluten-free prescribing might be a good starting point)
  • Plan how more patients may be identified
  • Identify how many diagnosed patients have had DEXA scanning
  • Review dietetic support for patients
DEXA=dual X-ray absorptiometry

  • EMA and TTG should be available at local laboratory services
  • Intestinal biopsy is required for those with positive EMA/TTG tests
  • Dietician input may help patient education and compliance
  • DEXA scan should be available
  • Once diagnosed and stable, patients with coeliac disease can be managed in the primary care setting
  1. Primary Care Society for Gastroenterology. The management of adults with coeliac disease in primary care. Rickmansworth: PCSG, 2006.
  2. Primary Care Society for Gastroenterology. Decision points for the management of adult coeliac disease in primary care. Rickmansworth: PCSG, 2000.
  3. Primary Care Society for Gastroenterology. PCSG guidelines on the follow-up of adult coeliac disease. Rickmansworth: PCSG, 2001.
  4. Johnston S, Watson R, McMillan S et al. Prevalence of coeliac disease in Northern Ireland. Lancet 1997; 350 (9088): 1370.
  5. www.coeliac.co.uk
  6. Hin H, Bird G, Fisher P et al. Coeliac disease in primary care: case finding study. Br Med J 1999; 318 (7177): 164–167.
  7. Sanders D, Patel D, Stephenson T et al. A primary care cross-sectional study of undiagnosed adult coeliac disease. Eur J Gastroenterol Hepatol 2003; 15 (4): 407–413.
  8. Scott E, Gaywood I, Scott B. Guidelines for osteoporosis in coeliac disease and inflammatory bowel disease. British Society of Gastroenterology. Gut 2000; 46 (Suppl 1): i1–i8.G