The management of adults with coeliac disease in primary care continued

Diagnosis

• Initial diagnosis is by means of a simple blood test for gliadin antibodies. Endomysium antibody (EMA) and tissue transglutaminase (TTG) are non-invasive tests that provide a simple means of screening for coeliac disease. Tissue transglutaminase is now the screening test of choice and is gradually replacing EMA. It may, however, be negative in 2.7% of people with coeliac disease who are IgA deficient. Therefore consider requesting an IgA level at the same time
• For patients with an uncertain diagnosis, retest serology after six weeks on a diet that includes four slices of normal bread per day for a minimum of two weeks. If the result is positive then the diagnosis needs to be confirmed by intestinal biopsies. Again these need to be taken while on a gluten-containing diet
• Following positive serology, a definitive diagnosis can be made by patient referral to a gastroenterologist for a small intestinal biopsy

Management

• Once diagnosis is confirmed, coeliac disease is managed by following a strict gluten-free diet which should resolve many of the symptoms and improve the patient's health outcome

Benefits of long-term adherence to a gluten-free diet

• Effective management of coeliac disease relies on regular follow-up of patients to ensure strict adherence to a gluten-free diet.

Other reasons to ensure adherence include:

• The risk of developing the long-term complications associated with coeliac disease, as previously mentioned, is likely to be reduced and the individual is likely to return to full health
• Almost 50% of all coeliac patients have an inadequate energy intake, and 11% have an inadequate intake of calcium and vitamin B6. 80% of patients with coeliac disease have an inadequate intake of vitamin D
• Regular follow-up visits to monitor adherence by a health professional has a positive impact and helps the patient maintain a gluten-free diet

Clinical monitoring of adherence to a gluten-free diet

• Serological tests to measure endomysial or tissue transglutaminase antibodies are an accepted and reliable marker for dietary adherence
• There is no need to repeat the small bowel biopsy after initiating a gluten-free diet unless the patient's clinical condition fails to improve

The management of adults with coeliac disease in primary care continued

Follow-up

• Patient adherence with a gluten-free diet is poor; ranging from 45—87%
• Good dietary adherence is aided by the ease with which patients can obtain appropriate amounts of gluten-free products on prescription. Regular access to a dietitian has shown to improve adherence to a gluten-free diet. Patients should therefore be followed up throughout their lifetime so that the primary healthcare team can ensure long-term adherence to a gluten-free diet
• Regular follow-up is also an opportunity to provide patient-centred care that is sensitive to the individual's circumstances

Frequency

• After diagnosis, the patient should be reviewed in primary care after three months and six months to ensure that they are making satisfactory progress and managing the diet
• Pregnancy is a particularly important time for patients to be reviewed
• If the patient is well, they should then be reviewed annually in primary care or sooner if problems arise

Organisation

• Create a database of coeliac disease patients to facilitate recall and audit
• Use a template to record clinical data in a standardised way, in order to facilitate audit and research
• Have a named person who will have clinical and administrative responsibility for the service
• The service should be audited annually: audit standards may include a number of patients who have recorded evidence of:
  • compliance with a gluten-free diet
  • nutritional status
  • body mass index
  • osteoporosis assessment

Annual assessment tests

• The annual assessment should involve assessment of, and motivation towards, strict adherence to a gluten-free diet. The prescription should be reviewed to ensure it is appropriate. Development of long-term complications should be monitored
• Coeliac disease status
  • measure weight, height and body mass index
  • assess symptoms; bowel function (stool frequency, consistency, blood in stool)
  • conduct investigations: haemoglobin, red cell folate, serum ferritin, serum albumin and alkaline phosphatase; patients with coeliac disease who adhere to a gluten-free diet often consume inadequate intakes of folic acid and iron
  • assess gliadin, endomysial or tissue transglutaminase antibodies to monitor significant dietary gluten ingestion
  • conduct routine blood tests into possible nutritional deficiencies ie calcium, vitamin D and B₁₂
• Disease prevention: osteoporosis risk assessment and management
  • 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
  • advise regular physical activity, reduce smoking and alcohol consumption
  • include a calcium supplement if required
  • vitamin D supplements can be prescribed if the patient has reduced mobility
  • hormone replacement therapy and biphosphonates should be considered if the patient is osteoporotic
• Because there is some degree of splenic atrophy in most patients with coeliac disease, it can be sufficiently severe to cause peripheral blood changes in about 25%. Patients should therefore be considered for:
  • vaccination against pneumococcus and haemophilus influenzae type b
  • vaccination against influenza
  • guidance about the increased risks attached to tropical infections e.g. malaria
  • life-long prophylactic antibiotics are not recommended
  • management of associated medical problems
  • discussion of familial risk if required. First-degree relatives of people with coeliac disease have a 1 in 10 chance of developing the disease and should be assessed if they develop suggestive symptoms

The management of adults with coeliac disease in primary care continued

The role of the primary healthcare team

GP

• The GP can ensure that:
  • at least the recommended minimum monthly amount of gluten-free products is prescribed to enable the patient to adhere to a balanced and healthy gluten-free diet. Patients have varying requirements for gluten-free foods depending on their age, gender, occupation and lifestyle
  • the patient is reviewed annually with or without the input of the gastroenterologist and/or dietitian, depending on the needs of the patient

Practice nurse

• The practice nurse can:
  • provide good, sensible, practical advice and refer to the dietitian and/or GP as required
  • assist and support patients in the adherence to a strict gluten-free diet
  • provide a first point of contact for the patient between medical and dietetic appointments
  • monitor the prescription of gluten-free foods and anthropometry (weight, body mass index)
  • arrange blood tests

Dietitian

• The dietitian has an important role in follow-up care by:
  • ensuring a balanced, varied gluten-free diet
  • reviewing the dietary needs regularly and recommending changes tothe prescription if required (this will require input from the GP)
  • assessing the nutritional status
  • monitoring the weight and body mass index
  • referring to the GP if problems arise
  • discussing Coeliac UK membership
  • advising on the use of Coeliac UK's Food and Drink Directory
  • providing general advice on food labelling

Pharmacist

• The pharmacist can:
  • input to the prescription needs of the patient
  • liaise with the healthcare team managing the patient
  • provide general advice and support to the patient

Referral to the gastroenterologist

• Referral 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

Useful sources of information

• Gluten-free foods: a prescribing guide. February 2004 (available via local PCT and PCSG)
• Coeliac UK: www.coeliac.org.uk
• Primary Care Society for Gastroenterology: www.pcsg.org.uk
• British Society for Gastroenterology: www.bsg.org.uk

full guidelines available from…
Primary Care Society for Gastroenterology, 21 Tower Street, London, WC2H 9NS (Tel – 0207 836 0088)
Email: secretariat@pcsg.org.uk

Primary Care Society for Gastroenterology. The management of adults with coeliac disease in primary care. December 2011.