The management of adults with coeliac disease in primary care

Primary Care Society for Gastroenterology


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Introduction

  • Coeliac disease is a chronic, permanent and if untreated, potentially life-threatening condition. In coeliac disease, the mucosa of the small intestine is damaged by gluten, a protein found in wheat, rye and barley. A similar protein in oats may cause damage in people with severe sensitivity to gluten
  • The damage to the small intestine results in the reduced ability to digest and absorb food and causes malabsorption of essential nutrients such as vitamins, iron, folic acid and calcium

Key facts about coeliac disease

  • As many as one in 100 people in the UK have positive coeliac serology; the clinical significance of this is unclear
  • Coeliac disease is under diagnosed in the UK
  • The only treatment for coeliac disease is a strict, life-long gluten-free diet. Effective management therefore relies on regular follow-up of patients to ensure strict adherence
  • Untreated coeliac disease often results in unnecessary morbidity including:
    • faltering growth in childhood
    • anaemia
    • osteopenia
    • osteoporosis
    • infertility
    • possible increase in the rare small bowel lymphoma and adenocarcinoma

Symptoms

  • Coeliac disease is often undiagnosed or misdiagnosed in general practice unless the condition is actively considered. Coeliac disease should also be considered and discounted before a diagnosis of irritable bowel syndrome is made
  • Coeliac disease should be considered in patients presenting with:
    • iron or folate deficiency anaemia
    • Vitamin D or Vitamin K deficiency
    • tired all the time ('TATT') or chronic fatigue
    • unexplained diarrhoea
    • abnormal levels of dental decay
    • persistent mouth ulcers and angular stomatitis
    • infertility
    • dermatitis herpetiformis
  • Particularly if the patient also has:
    • type 1 diabetes
    • autoimmune thyroid disease
    • osteoporosis
    • infertility
    • Down's syndrome
  • Due to the genetic basis of coeliac disease, it should be considered if there is a family history of coeliac disease

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 two slices of normal bread per day
  • Following a positive serology, the diagnosis needs to be confirmed by small bowel biopsies while the patient is on a gluten-containing diet

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 testing is an accepted and reliable marker for dietary adherence to a gluten-free diet
  • 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

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 after three months and six months to ensure that they are making satisfactory progress and managing the gluten-free diet. Thereafter, a yearly follow-up is recommended
  • Pregnancy is a particularly important time for patients to be reviewed

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 coeliac serology to monitor significant dietary gluten ingestion
    • conduct routine blood tests into possible nutritional deficiencies, i.e. 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 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 to the 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

References

full guidelines available from…
Primary Care Society for Gastroenterology, 74 Back Church Lane, London E1 1AF (Tel – 020 7845 0583)
Email: secretariat@pcsg.org.uk

Primary Care Society for Gastroenterology. The management of adults with coeliac disease in primary care. May 2006, updated September 2012
First included: May 2006, Dec 2011, November 2012


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