Dr John O'Malley discusses the NICE recommendations on who should be offered serological testing for coeliac disease and the rationale for improving detection rates
  • Coeliac disease:
    • can present with a wider range of symptoms, not just fatigue, diarrhoea, or constipation
    • is associated with a number of other disorders (e.g. irritable bowel syndrome, type 1 diabetes)
  • Undiagnosed coeliac disease can affect both the patient and foetal health
  • NICE has made recommendations on individuals who should:
    • undergo serological testing for coeliac disease
    • be considered for serological testing
  • Case finding for coeliac disease is a cost-effective approach
  • A gluten-free diet should not be started until a diagnosis of coeliac disease has been confirmed by intestinal biopsy.

NICE Clinical Guideline 86 on Recognition and assessment of coeliac disease has been awarded the NHS Evidence Accreditation Mark.

This Mark identifies the most robustly produced guidance available. See evidence.nhs.uk/accreditation for further details.

Coeliac disease is an autoimmune condition, which was once thought to be uncommon, but is now being seen increasingly as an important cause of illness. It is associated with a wide variety of presentations and conditions. The presentation of coeliac disease has often challenged strongly held misconceptions that the majority of affected patients have pale floating stools and experience weight loss.1–3 In fact, the latter symptom is seen in a minority of patients, with normal and even increased weight being more likely.4 Until it is possible to alter the toxicity of cereal proteins, the adoption of a gluten-free diet remains the sole intervention for coeliac disease.5

It is estimated that 1 in 100 of the population has coeliac disease, but only 10%–15% have been clinically diagnosed.6 Clinical Guideline 86 on the recognition and assessment of coeliac disease was published by NICE following the realisation that increasing numbers of cases of coeliac disease remained undiagnosed, therefore subjecting patients to what is often years of ill-health.6 It did not recommend an ‘across-the-board’ screening programme, but rather a case-finding approach based on evidence and cost effectiveness.7 In the current climate of primary care commissioning, detection of coeliac disease in high-risk groups could have benefits not just in improved patient health, but in terms of reducing NHS expenditure as there is increasing evidence that significant healthcare costs are accrued because patients remain undiagnosed for long periods of time.8 Diagnosis and subsequent dietary intervention have been shown to markedly reduce the burden of coeliac disease on the healthcare economy, with less money spent on medications, including antibiotics.9

Serological testing

NICE has made recommendations on which patient groups should be offered serological testing for coeliac disease (see Box 1).6,10 Testing should be performed if patients have certain autoimmune conditions (e.g. type 1 diabetes mellitus) or if they have first-degree relatives with coeliac disease as some people may have a genetic predisposition.

The Guideline Development Group also believed that based on evidence from cohort studies and the Group’s experience and opinion, testing for coeliac disease should be considered if patients have certain co-morbid conditions (see Box 1).

Box 1: Testing for coeliac disease6

Offer testing to children and adults with any of the following signs and symptoms or conditions:

  • chronic or intermittent diarrhoea
  • failure to thrive or faltering growth (in children)
  • persistent and unexplained gastrointestinal symptoms including nausea or vomiting
  • prolonged fatigue
  • recurrent abdominal pain, cramping, or distension
  • sudden or unexpected weight loss
  • unexplained iron deficiency anaemia or other unspecified anaemia
  • autoimmune thyroid disease
  • dermatitis herpetiformis
  • irritable bowel syndrome
  • type 1 diabetes
  • first-degree relatives with coeliac disease.

Consider offering testing to children or adults with any of the following:

  • Addison's disease
  • amenorrhoea
  • aphthous stomatitis (mouth ulcers)
  • autoimmune liver conditions
  • autoimmune myocarditis
  • chronic thrombocytopenia purpura
  • dental enamel defects
  • depression or bipolar disorder
  • Down's syndrome
  • epilepsy
  • low trauma fracture
  • lymphoma
  • metabolic bone disease (such as rickets or osteomalacia)
  • microscopic colitis
  • persistent or unexplained constipation
  • persistently raised liver enzymes with unknown cause
  • polyneuropathy
  • recurrent miscarriage
  • reduced bone mineral density
  • sarcoidosis
  • Sjögren's syndrome
  • Turner's syndrome
  • unexplained alopecia
  • unexplained subfertility.

Implications for primary care

It is clear that coeliac disease can be a contributing factor to many other disorders, and as the NICE recommendations highlight, the disease itself can present with a wide range of symptoms of which fatigue, diarrhoea, constipation, nausea/vomiting, and abdominal pain are just a few. There is therefore, a wealth of opportunities in primary care for testing for coeliac disease—it should not be thought of as just being a gastrointestinal condition, a label that has not been helpful in the past. Testing for coeliac disease should be regarded as routine in cases of anaemia and fatigue; the NICE guideline also suggests strongly that testing should be more widespread because of the wide range of associated conditions.11

The long-term disability that can result from undiagnosed coeliac disease can have important effects not only for the patient, but also for the foetus—intrauterine growth restriction is observed far more frequently in those babies born to mothers with undiagnosed disease.12 There is also evidence that untreated coeliac disease in the father can affect foetal growth.13

Conditions associated with coeliac disease

One paper has shown that the prevalence of positive serology for coeliac disease is three times higher in people with irritable bowel syndrome (IBS) than in the general population (around 1%).14 The presenting complaint of many patients with coeliac disease can often resemble IBS and the absence of appropriate testing can result in years of ill-health and increased costs, both in consultations and therapy.15 Diagnosis of coeliac disease in patients with supposed IBS can therefore be both cost effective and result in an increase in quality of life years gained.16

The relationship between type 1 diabetes and coeliac disease is particularly important as some studies have shown a prevalence of around 6% for coeliac disease in people with type 1 diabetes.17 There is evidence that a gluten-free diet in people with these two co-existing conditions improved growth and influenced diabetic control.18

Some of the disorders associated with coeliac disease, such as thyroid disease and epilepsy, are covered by the quality and outcomes framework.19 This should make the identification of at-risk patients far easier as there are existing database records for these conditions, especially as many are template driven; the addition of a requirement to test for coeliac disease is a relatively simple adaptation to make.


People with positive serological results should be referred for small bowel biopsy6—the reference standard—to confirm or exclude a diagnosis of coeliac disease. It is important to be mindful to tell patients not to adopt a gluten-free diet on the basis of positive serology, but to wait for a definitive histological diagnosis.6 Serological testing for tissue transglutaminase (tTGA) provides a cheap, reliable, and sensitive way of screening.

The adoption of point-of-care tests in primary care offers the opportunity to give a fairly immediate answer to the patient; however, although emerging results are promising, there is controversy over whether the sensitivities and specificities of such tests mirror that of conventional serology.20,21 The NICE guideline discouraged the use of point-of-care tests,6 but research showing improvements in the technology used will mean that eventually this advice may need reviewing.22 The bigger question is whether primary care would regard it as a cost-effective replacement for serology, as some studies have shown that training in the use of such kits is essential if sensitivity and specificity rates are to rival serology.23

The prospect of a non-biopsy based testing method for coeliac disease is appealing, particularly as endoscopy can be unpleasant at times, and is not an inexpensive procedure; its lack of availability in areas of inadequate provision can result in delays to health improvement, as patients are required to remain on a gluten-containing diet until histological diagnosis. As yet, we are not able to recommend a ‘no-biopsy’ diagnosis in the vast majority of patients, but the evidence may need updating in the next few years.24


Coeliac disease is a far bigger problem for primary care than previously considered. The way it presents can mirror IBS and other conditions; it is also associated with a wide variety of both autoimmune and non-immunologically related disorders. Patients with undiagnosed coeliac disease have long periods of ill-health, with profound consequences on their quality of life and that of their offspring. Yet, once diagnosed, a gluten-free diet can result in benefits to health and the wider health economy through a reduction in cost to the NHS. However, the first step is to test for this condition and it is therefore crucial that GPs and commissioners realise the importance of more widespread testing for coeliac disease both for the sake of undiagnosed patients and for health-economic reasons.

NICE implementation tools

NICE has developed the following tools to support implementation of Clinical Guideline 86 (CG86) on Coeliac disease: recognition and assessment of coeliac disease. The tools are now available to download from the NICE website:

NICE support for commissioners

Costing report Commissioning.eps

Costing reports are estimates of the national cost impact arising from implementation based on assumptions about current practice, and predictions of how it might change following implementation of the guideline.

Commissioning factsheet Commissioning.eps

Commissioning factsheets are designed to help NHS commissioners plan for the implementation of NICE guidance.

Costing template Audit.eps

Costing templates are spreadsheets that allow individual NHS organisations and local health economies to estimate the costs of implementation taking into account local variation from the national estimates, and they quickly assess the impact the guideline may have on local budgets.

NICE support for service improvement systems and audit

Audit support Education.eps

Audit support is developed to support the implementation of NICE guidance. The aim is to help NHS organisations with a baseline assessment and to assist with the audit process, thereby helping to ensure that practice is in line with the NICE recommendations. The audit support is based on the recommendations of the guidance.

NICE support for education and learning

Slide set Education.eps

The slides provide a framework for discussing the NICE guideline with a variety of audiences and can assist in local dissemination. This information does not supersede or replace the guidance itself.

Key to NICE implementation icons
 Commissioning.eps NICE support for commissioners
  • Support package for commissioners and others for quality standards
  • NICE guide for commissioners
  • NICE cost impact support for guidance (selection from national report/local template/costing statement, dependent on topic)
 Audit.eps NICE support for service improvement systems and audit
  • Forward planner
  • 'How to' guides (generic advice on processes)
  • Local government briefings (with Centre for Public Health Excellence)
  • Baseline assessment tool for guidance
  • Audit support including electronic data collection tools
  • E-learning modules (commissioned)
 Education.eps NICE support for education and learning
  • Clinical case scenarios
  • Learning packages including slide sets
  • Podcasts
  • Shared learning and other local best practice examples
  • Coeliac disease:
    • is under-diagnosed in primary care
    • can cause many symptoms that if diagnosed incorrectly can incur NHS costs, in terms of unnecessary referrals and medication
  • Case finding using serology blood tests in at-risk groups can identify patients for referral for small bowel biopsy
  • A programme of case finding is likely to increase the demand for, and the costs of, upper gastrointestinal endoscopy in the short term
  • Commissioners would be wise to discuss the introduction of such a programme with local providers to ensure there is sufficient endoscopy capacity and that referral to treatment targets are not breached
  • Tariff cost for diagnostic upper gastrointestinal endoscopy day case with biopsy = £405 (FZ61Z).a


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  4. Jones S, D'Souza C, Haboubi Y. Patterns of clinical presentation of adult coeliac disease in a rural setting. Nutr J 2006; 5: 24.
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  6. National Institute for Health and Care Excellence. Coeliac disease: recognition and assessment of coeliac disease. Clinical Guideline 86. London: NICE, 2009. Available at: www.nice.org.uk/Guidance/CG86 nhs_accreditation
  7. Berti I, Della Vedova R, Paduano R et al. Coeliac disease in primary care: evaluation of a case-finding strategy. Dig Liver Dis 2006; 38 (7): 461–467.
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  11. Sanders D, Evans K, Hadjivassiliou M. Fatigue in primary care. Test for coeliac disease first? BMJ 2010; 341: c5161.
  12. Ludvigsson J, Montgomery S, Ekbom A. Celiac disease and risk of adverse fetal outcome: a population-based cohort study. Gastroenterology 2005; 129 (2): 454–463.
  13. Ludvigsson J, Ludvigsson J. Coeliac disease in the father affects the newborn. Gut 2001; 49 (2): 169–175.
  14. Sanders D, Patel D, Stephenson T. A primary care cross-sectional study of undiagnosed adult coeliac disease. Eur J Gastroenterol Hepatol 2003; 15 (4): 407–413.
  15. Bottaro, G, Failla P, Rotolo N et al. Changes in coeliac disease behaviour over the years. Acta Paediatr 1993; 82 (6–7): 566–568.
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  17. Picarelli A, Sabbatella L, Di Tola M et al. Anti-endomysial antibody of IgG1 isotype detection strongly increases the prevalence of coeliac disease in patients affected by type 1 diabetes mellitus. Clin Exp Immunol 2005; 142 (1): 111–115.
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  19. British Medical Association, NHS Employers. Quality and outcomes framework 2012/13. London: BMA, NHS Employers, 2012. Available at: www.bma.org.uk/employmentandcontracts/independent_contractors/quality_outcomes_framework/qofchanges2012.jsp
  20. Korponay-Szabo I, Raivio T, Laurila K et al. Coeliac disease case finding and diet monitoring by point-of-care testing. Aliment Pharmacol Ther 2005; 22 (8): 729–737.
  21. Ferre-Lopez S, Ribes-Koninckx C, Genzor C et al. Immunochromatographic sticks for tissue transglutaminase and antigliadin antibody screening in celiac disease. Clin Gastroenterol Hepatol 2004; 2 (6): 480–484.
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