This site is intended for health professionals only

Coeliac disease: essential facts for practice nurses

Sohail Butt
General Practitioner
Studholme Medical Centre

Coeliac disease (CD) is a chronic and permanent  inflammatory disease of the upper small intestinal mucosa. It is triggered in susceptible people by eating gluten.(1) Inflammation usually leads to the malabsorption of several important nutrients. CD is closely related to dermatitis herpetiformis, where a skin rash and small intestinal mucosal changes, similar to those seen in CD, are typically present, and both respond to withdrawal of gluten.
People with CD may present with a range of symptoms, which can be divided into intestinal features and those caused by malabsorption. However, many patients (especially those presenting in adulthood) have minimal or atypical symptoms (see Table 1), such as anaemia and chronic fatigue, and unless the diagnosis is considered, it can be easily missed or misdiagnosed.(2)


Ten years ago CD was considered a comparatively uncommon disorder, with a prevalence of 1 in 1,000. Several recent population studies have shown a much higher prevalence, and it is now estimated to affect 1 in 300 individuals.(3)
CD can occur at any age, but incidence peaks between 30 and 45 years, with the average age of diagnosis at 44 years.(4) Although CD is strongly linked with childhood, it has become increasingly uncommon in childhood. It is reported that 5-10% of first-degree family members of people with CD are affected by the condition, so practice nurses should record family history of CD during the new patient assessment.

Associated ­conditions
Recent screening studies have shown an increased prevalence of CD in certain conditions, such as type 1 diabetes(5) and autoimmune thyroid disease.(6) Practice nurses seeing people with type 1 diabetes should consider the diagnosis in those patients who develop chronic diarrhoea, anaemia or chronic fatigue. A common genetic background predisposing to similar immune-mediated disease mechanisms may explain these associations. An increased prevalence has also been found in patients with ­osteoporosis, epilepsy and various undefined ­neurological disorders.
Diagnosis of people with coeliac disease
Many patients have minimal or atypical symptoms, such as anaemia and chronic fatigue.(2) Unless the diagnosis is considered in patients with malabsorption symptoms, anaemia and chronic fatigue (especially if there is a family history of the disease), it can easily be missed.(2)
The development of the endomysial antibody test has facilitated serological assessment of CD in primary care. Endomysial antibodies are closely associated with CD, the test has a high specificity (approaching 100%), and a sensitivity of 86% or greater.(7,8) Assays for antigliadin antibody can help in diagnosis, enabling almost all patients to be identified.(9)
A positive endomysial antibody test warrants a referral to a gastroenterologist, who will usually arrange an endoscopy and small bowel biopsy. The characteristic small bowel mucosal changes and clinical response to a gluten-free diet confirm the diagnosis.

Initial management
Keeping to a gluten-free diet for life is the main ­treatment, but it can be difficult - there are often hidden sources of gluten in processed food. Gluten is found in wheat, barley, rye and possibly oats. After ­starting a gluten-free diet, most patients show a rapid clinical response, with ­improvement of symptoms within weeks. Patients may require vitamin and mineral supplements for the first six months following diagnosis. Guidelines and food lists provided by Coeliac UK are helpful. Adherence to a gluten-free diet can be monitored by serial measurement of antigliadin or antiendomysial antibodies.
Although oats cereal is traditionally excluded in a gluten-free diet, recent clinical studies have provided strong evidence that oats do not damage the mucosa of patients with CD.(10) However, it is important to advise patients that the oats must be free of other contaminating cereals.

Follow-up care
When a patient with CD keeps to a strict gluten-free diet, the prognosis is excellent and the patient can usually lead an otherwise normal life. Regular follow-up has been shown to correlate to dietary compliance. Failure to keep to a gluten-free diet or failure to respond to dietary treatment may result in continuing symptoms and in the two main complications of osteoporosis and malignancy.(11,12)
People with CD are at an increased risk of osteoporosis and should be considered for a dual-energy X-ray absorptiometry (DEXA) scan at diagnosis, and if they are menopausal women, men over 55 years, or patients of any age following a fragility fracture. Patients should be advised to maintain their bone mineral density by keeping to a gluten-free diet, maintaining adequate calcium intake (at least 1,000mg a day), taking regular exercise, and reducing tobacco and alcohol consumption.
The Department of Health recommends pneumo-coccal immunisation for people with CD because of their predisposition to serious pneumococcal infection. Practice nurses should ensure that patients receive vaccination.

CD is a common, underdiagnosed condition in primary care,(2) with significant morbidity and mortality. The availability of specific screening blood tests, effective dietary treatment, and benefits of follow-up care may allow doctors and nurses in primary care to improve the health of people with coeliac disease.




  1. Marsh MN. Mucosal pathology in gluten sensitivity. In: Marsh MN, editor. Coeliac disease. Oxford: Blackwell Scientific; 1992:136-91. 
  2. Hin H, et al. Coeliac disease in primary care: case finding study. BMJ 1999;318:164-7.
  3. McMillan SA, et al. Factors ­associated with serum antibodies to reticulin, endomysium, and gliadin in an adult population. Gut 1996;39:43-7.
  4. Catassi C, et al. Coeliac disease in the year 2000: exploring the iceberg. Lancet 4996;343;202-3.
  5. Cronin CC, Shanahan F. Insulin-dependent diabetes mellitus and coeliac disease. Lancet 1997;349:1096-7. 
  6. Midhagen G, Jarnerot G, Kraaz W. Adult coeliac disease within a defined geographic area in Sweden. A study of prevalence and associated diseases. Scand J Gastroenterol 1988;23:1000-4.
  7. Feighery C, Weir DG, Whelan A, et al. Diagnosis of gluten-sensitive enteropathy: is exclusive reliance on histology appropriate? Eur J Gastroenterol Hepatol 1998;10:919-25.
  8. Corrao G, Corazza GR, Andreani ML, et al. Serological screening of coeliac disease: choosing the optimal procedure according to various ­prevalence values. Gut 1994;35:771-5.
  9. Burgin-Wolff A, Hadziselimovic F. Screening test for coeliac disease. Lancet 1997;349:1843-4.
  10. Srinivasan U, Leonard N, Jones E, et al. Absence of oats toxicity in adult coeliac disease. BMJ 1996;313:1300-1.
  11. Walters JR, et al. Detection of low bone mineral density by dual energy X-ray absorptiometry in unsuspected ­suboptimally treated coeliac disease. Gut 1995;37:220-4.
  12. Holmes GKT, Prior P, Lane MR, Pope D, Allan RN. Malignancy and coeliac disease effect of a gluten-free diet. Gut 1989;30:333-8.

Coeliac UK (formerly the Coeliac Society) Open to those who have been medically ­diagnosed with coeliac disease. All members are forwarded a pocket-sized book of gluten-free food that includes an ­appendix of prescribable items.
Coeliac UK
PO Box 220
High Wycombe
Bucks HP11 2HY
T:01494 437278
F:01494 474349

Starter packs
Manufacturers of commercial gluten-free foods produce starter packs for patients, which include breads, pasta, biscuits, gluten-free flour mix, recipes and an explanatory video. Forms can be obtained for your patient by writing to: 
SHS International
100 Wavertree Boulevard
Liverpool L7 9PT
T:0151 228 1992

Advice lines
Advice lines have been set up to aid healthcare professionals and are operated by dietitians. These give access to regular reviews of clinical papers, copies of clinical abstracts, product guides and patient support materials.
Juvela Nutrition Centre Advice Line
T:0151 228 1992

Guidelines on the web
Primary Care Society for Gastroenterology Guidelines on follow up care of adult coeliac disease and Guidelines on the management of adult coeliac disease in primary care