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Coeliac disease: is your patient 1 in 100?

Shirley James
RN BN(Hons)
Upper Gastrointestinal Nurse Practitioner
Southampton City Primary Care Trust

David Chan
Upper Gastrointestinal Nurse Practitioner
Southampton City Primary Care Trust
Mid Hampshire Primary Care Trust
Southampton University Hospitals NHS Trust

Coeliac disease (CD), also known as gluten-sensitive enteropathy, is a lifelong, inflammatory condition of the upper small intestine, which, if left untreated, can be potentially life threatening. As a result of an autoimmune response to gliadin, a prolamin (alcohol-soluble protein) found in wheat, barley, rye and to a lesser extent oats, atrophy of the normal villous structure occurs (see Figure 1).* Villous atrophy can be partial or total leading to malabsorption of essential nutrients, including vitamins, iron, calcium and folic acid.


Signs and symptoms
The most common age for CD to present is 30-45 years with 25% of people diagnosed aged over 60. It has a gender ratio of three females to one male. First-degree relatives of those with coeliac disease have a 20% risk of developing it themselves.(3)
Signs and symptoms presentation varies widely between patients ranging from one to multiple (see Box 1). Change in bowel habit and/or symptomatic anaemia (due to malabsorption of iron, folate or B12) can be present. However, up to one-third of patients are totally asymptomatic. The symptom of weight loss is indiscriminate to CD. It is now not unusual for CD to present in obese people.(4) This paradox may be associated with overcompensation of absorption in the unaffected small intestine. 


Various diseases may have a chance-association with CD (see Table 1); many believe that there is a strong link with similar autoimmune-mediated diseases.(2)


It is estimated that 80% of CD is undiagnosed or misdiagnosed, usually as irritable bowel syndrome (IBS) commonly, during early stages of symptoms presentation. By routinely including a blood test for gliadin antibodies, the diagnostic yield can be significantly increased. Endomysium antibody (EMA) is the test of choice recommended by the Primary Care Society for Gastroenterology.(5) Locally in Southampton, tissue transglutaminase (TTG) is favoured, as the reliability has improved (99% specificity and 97% sensitivity). However, 2% of people with CD are immunoglobulin A (IgA) deficient resulting in negative EMA and TTG.5 Thus, testing for immunoglobulin
antibodies is recommended. To promote accurate diagnosis it is important that before blood tests patients should have a normal gluten-containing diet for at least two weeks (preferably six weeks), with at least four slices of normal bread daily.(4)
The "gold standard" for diagnosis of CD is duodenal biopsy by an oesophago-gastroduodenoscopy (OGD) while on a gluten-containing diet.(2) Therefore after a positive blood test patients should be referred to a gastroenterologist for an OGD to elicit a definitive diagnosis.
Biocard (JR Biomedical) is available over the counter at certain health food stores or online at for self-measuring of TTG antibodies at home. This test claims reliability equal to that of laboratory-based TTG. However, Coeliac UK stresses that this is not a substitute for a duodenal biopsy. People found to have a positive reading must consult their GP.

The only recommended treatment for CD is a strict, lifelong, gluten-free diet (GFD). Seventy percent of patients will have symptoms improvement within two weeks of diet commencement; total villous regeneration may take months or even years. In rare cases where patients have severe diarrhoea, dehydration and weight loss, intravenous corticosteroids may be used.
Most patients have varying degrees of splenic atrophy. This can lead to peripheral blood changes in approximately 25% of patients. The PCSG therefore recommends that patients should (in consultation with their GP) be considered for vaccination against pneumococcus Haemophilus influenzae type b and influenza.(5)

Untreated or undertreated CD can lead to continuing symptoms and unnecessary morbidity. Two major complications are osteoporosis (calcium malabsorption) and malignancy. With the latter T-cell lymphoma and oesophageal/pharyngeal cancer are well documented.  The risk of malignancy reduces to that of the normal population after adhering to a GFD for 3-5 years.(6) There is also a 2.7-3% risk of subfertility in untreated CD, further supporting full dietary compliance.
If the patient fails to gain symptomatic relief and/or physiological improvement from a GFD, the most likely causes are noncompliance or crockery and cutlery cross-contamination. However, persistent symptoms (in the presence of a strict GFD) may indicate coexisting morbidity such as IBS, lactose intolerance, microscopic colitis or pancreatic insufficiency.

Initial management
The PCSG recommends review of patients' progress at three and six months in a hospital gastroenterology outpatient clinic after diagnosis.
Being diagnosed with CD is a life-changing event. Emotions of relief and depression are common.  Feelings of disbelief are also experienced if the patient is asymptomatic. At their outpatient consultation patients will be informed about their disease process and importance of dietary compliance to prevent complications, supplemented with counselling. Iron, vitamin B12 and folate deficiencies will be managed appropriately. 
Modification of dietary habits can be fraught with difficulties. Dietetic support is essential, enabling patients to understand which foods they should avoid and what alternatives are available. Certain gluten-free products are available on prescription. Table 2 provides a guide on the minimum quantities, according to energy requirements, that can be prescribed by medical/nonmedical prescribers.(7)


Patients should be encouraged to become a member of Coeliac UK. They will be provided with information on living with CD, an annually updated "Food and Drink" directory of gluten-free foods and a quarterly newsletter. There may also be a local support group that patients can take advantage of.
Due to the risk of calcium malabsorption, osteopenia and/or osteoporosis can develop. A baseline dual energy X-ray absorptiometry (DXA) scan should be carried out at diagnosis to measure bone density. If normal, this should be repeated at age 55 in men, in menopausal women and if a fragility fracture occurs. With a positive diagnosis advice should be sought from local specialists on calcium, vitamin D supplementation and bisphosphonate therapy. Lifestyle adaptation including daily weightbearing exercise, avoiding smoking tobacco and limiting alcohol consumption (within government recommendations) helps to improve and maintain healthy bones. Additionally, a diet with adequate vitamin D and calcium, ie, dairy products, green-leafed vegetables and pulses are essential. Post-menopausal women should aim for 1 g dietary calcium per day.
A repeat duodenal biopsy is recommended four to six months postintroduction of a GFD to assess improvement in villous morphology from baseline samples.(5) Providing histological improvement is identified no further OGDs are required, unless clinically indicated.

Long-term management
A national survey of affected patients receiving gluten-free foods on prescription found only 37% adhered to a strict GFD.(8) Annual review is therefore essential to discuss individual compliance issues and prevent long-term complications. A suggested format for an annual review is outlined in Box 2.(5)


Fertile women should be given information relating to preparation for motherhood, if required. Folic acid supplements should be taken preconceptually until the 12th week of pregnancy alongside standard nutritional advice. Some mothers may experience deterioration of their symptoms during pregnancy and require further support.
A dietitian or nurse can manage annual reviews in primary or secondary care. In order to meet clinical governance requirements and professional standards the reviewer must possess up-to-date knowledge on CD, its management programme, complications recognition and route of referral to a specialist (see Box 3). A small study of dietitian-led follow-up programmes found them effective, safe and popular with patients.(8) Practice nurses can also play a part in follow-up care (see Box 4).(5)



Patients under the care of a gastroenterologist locally in Southampton University Hospitals NHS Trust have had their care managed by a gastrointestinal nurse specialist (GNS) for a number of years. Recently, this service has responded to the changing demands within the NHS plan for chronic disease management.(9) To reduce hospital outpatient follow-up visits a "virtual clinic" for patients with stabilised CD has been established. A bespoke database is used to identify patients due for annual review. A blood test form and questionnaire, based on the annual review content outlined in Box 2, are posted to patients. Following review by the GNS if the blood results are normal and patients are asymptomatic, the GNS will update them and their GP by letter. Those with abnormal results are contacted by the GNS and managed appropriately. Patients who have concerns about their disease can telephone the GNS who will, if appropriate, arrange an outpatient review. Although in its infancy, this innovation has already received endorsements from patients of all ages; from the aspects of efficient use of time to cost-effectiveness, as it has a "back-up" system to access specialist help when required.

The management of patients with CD is a joint responsibility between healthcare professionals across primary and secondary care. The process begins with symptoms recognition and an investigation strategy. With a definitive diagnosis patients are able to commence a GFD with confidence, relieving their debilitating symptoms and improving quality of life. Patients require lifelong surveillance if such issues as dietary compliance and prevention of long-term significant complications are to be addressed. This support system requires partnership between healthcare professionals across care settings. With sound knowledge of the disease process and its manifestations, consolidated with national/local evidence-based guidelines, primary care nurses can provide an important link. All these factors are fundamental to shaping the care of patients with CD in the UK.


  1. Bingley PJ, Williams AJ, Norcross AJ, et al. Undiagnosed coeliac disease at age seven: population based prospective birth cohort study. BMJ 2004;328:322-3.
  2. British Society of Gastroenterology. Guidelines for the management of patients with coeliac disease. London: BSG; 2002.
  3. Dubé C, Rostom A, Sy R, et al. The prevalence of celiac disease in average-risk and at-risk Western European populations: a systematic review. Gastroenterology 2005;128:S57-67.
  4. Furse RM, Mee AS. Atypical presentation of coeliac disease. BMJ 2005;330:773-4.
  5. Primary Care Society for Gastroenterology. The management of coeliac disease in primary care. London: PCSG; 2006.
  6. Mearin ML, Catassi C, Brousse N, et al. European multi-centre study on coeliac disease and non-Hodgkin lymphoma. Eur J Gastroenterol Hepatol 2006;18(2):187-94.
  7. British Dietetic Association, Coeliac UK, Primary Care Society for Gastroenterology. Gluten-free foods: a prescribing guide. Surrey: Good Relations Healthcare; 2004.
  8. Leeds JS, Deakin M, Bolton R, James G, Sayer JM. Dietician-led follow-up for adult coeliac disease: Is it safe? Gut 2005;54(SII):A111.
  9. Department of Health. Our health, our care our say: a new direction for community services. London: DH; 2006.

British Society of Gastroenterology
Coeliac UK
Self-testing Kits for Coeliac Disease
Gluten-free Food Prescribing Guide
Primary Care Society for Gastroenterology
Prescription Prepayment Certificates