Most cases of coeliac disease remain undiagnosed. Dr Charles Sears explains how PCSG guidance will improve detection


Coeliac disease is a common condition, affecting at least 1 in 300 adults, and more than two-thirds of those are undiagnosed.

It may be that they are undiagnosed because they are not bothered by symptoms, but coeliac disease is associated with an increased risk of osteoporosis, small bowel lymphoma, carcinoma of the small bowel, oesophagus and pharynx, and may also lead to reversible infertility. It is thus very much a condition for which we should 'adopt an active case finding strategy'.

The evidence for the advice, which is not cited in the guideline, is rated by the PCSG largely as 'evidence from descriptive studies'. Only the advice to use a strict gluten-free diet as the primary treatment has a higher evidence rating ('evidence from non-randomised controlled or other quasi-experimental studies').

This demonstrates, perhaps, a need for more research, but the guideline works from the evidence that exists, giving us a coherent and straightforward way of detecting coeliac disease, and managing it thereafter.

The guideline (Figure 1, bottom) draws our attention to the patients in whom we should consider coeliac disease, namely those who present with:

Iron or folate deficiency anaemia
Tired all the time or chronic fatigue

Unexplained diarrhoea

This is especially the case if they present also with a family history of coeliac disease, or if they have insulin-dependent diabetes, autoimmune thyroid disease, osteoporosis, infertility or an undefined neurological disorder. This certainly gives me food for thought.

The document goes on to explain the use of the endomysial antibody test (EMA) as the initial screening test of choice. It also advises checking the IgA level at the same time, as the EMA is negative in the 2% of patients with coeliac disease who are IgA deficient.

In patients where the diagnosis is not certain, the EMA can be repeated after 6 weeks on a diet that includes the addition of four slices of bread daily.

In the event of a positive result, intestinal biopsy is still used, and serial EMA tests are a reliable way of monitoring dietary adherence thereafter.

There is evidence that long-term dietary compliance, along with calcium and vitamin D supplements, protects against further bone loss, and that bone mineral density significantly increases, even in the early stages of treatment. The evidence also appears to support an improvement in the other possible sequelae of coeliac disease.

The guideline emphasises the need for bone mineral density assessment at diagnosis, and at menopause for women or 55 years of age for men, as well as following a fragility fracture.

The importance of supporting dietary compliance and the value of a dietitian who can provide a lead in the provision of follow-up care are emphasised.

I found this guideline simple and easy to use. I would not be at all surprised if the number of diagnoses of coeliac disease rises in my practice and elsewhere. If this is the case, then it must benefit our patients.

Figure 1: First page of the PCSG guidelines on the management of adult coeliac disease
first page of guideline
  • Copies of the guidelines Decision Points in the Management of Adult Coeliac Disease in Primary Care can be obtained from the Primary Care Society for Gastroenterology, tel: 01452 304638.

Guidelines in Practice, January/February 2000, Volume 3
© 2000 MGP Ltd
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