Chronic management

Coeliac Disease


  • Coeliac disease is an immune-mediated systemic disorder elicited by gluten and related prolamines in genetically susceptible individuals which is characterised by the presence of a variable combination of gluten-dependent clinical manifestations, coeliac disease specific antibodies, HLA DQ2 and DQ8 haplotypes and enteropathy.
  • It affects at least 1% of the UK population and can be diagnosed at any age from early childhood to later life.
  • Traditionally viewed as a condition resulting in malabsorption with associated gastrointestinal symptoms, it is increasingly recognised that the disease may trigger a wide spectrum of clinical and mucosal responses. Some patients present with non gastrointestinal symptoms, others report no apparent symptoms. It can also manifest itself as the skin disorder, dermatitis herpetiformis.
  • Due to the variability of symptoms and the belief that it is not a common condition, it often goes unrecognised and undiagnosed. Delayed diagnosis is a concern because of the associated long-term complications such as infertility, osteoporosis and small intestinal malignancy.

Patient View

  • Patients are frustrated that it takes many doctors so long to consider the diagnosis and by a lack of expertise and continuity in both primary and secondary care.
  • Patients want advice, principally dietary, from an individual who knows more than they do with more consultation time than generally available with doctors.
  • Access to gluten-free food on prescription is a source of frustration with widely varying practice across the country. Many patients rate access to prescriptions as particularly important in maintaining their diet.
  • Patients appreciate the support of Coeliac UK in their self care.

Current Practice

  • Diagnosis is made using highly sensitive and specific IgA TTG and/or IgA EMA antibody blood tests, followed by a D2 biopsy (at least 4 specimens) to confirm the diagnosis.
  • Identification of at risk groups and those with non specific symptoms who should be offered serological testing, according to the NICE guideline CG86, is not currently undertaken on a systematic basis by frontline healthcare professionals, particularly GPs.
  • There is no clear evidence base for creening people with coeliac disease for osteoporosis and practices vary.
  • Management is by avoidance of gluten, facilitated by contact with clinicians for advice on the gluten-free diet plus easy access to gluten-free foods.
  • The recommended annual follow-up is not the norm for most patients.
  • Recent moves to deliver annual review in primary care have been questioned on quality grounds. Reviews should be undertaken by a clinician with a specialist knowledge of coeliac disease. This is often only available in secondary care at present
  • There is a general paucity of dietetic services and in particular for coeliac disease.
  • Approximately 30% of patients may have persisting symptoms requiring further input from a secondary care clinician with a specialist interest in the disease.

Recommended Practice and Opportunities for Integrated Working

  • Recently revised guidance providing an algorithm for diagnosis in children and young adolescents has been issued. It suggests that in a minority of patients a biopsy may no longer be necessary to confirm diagnosis. Essential to any new service is the recognition that coeliac disease diagnosis must still be confirmed in secondary care. A review of diagnosis in adults will be undertaken in response to these guidelines; it is not known if a similar approach will be adopted.
  • It is essential that reviews are undertaken by a clinician with expertise in coeliac disease. Furthermore expert dietary advice, ideally from a dietitian with a specialist interest in coeliac disease, must be available. This could be delivered in primary or secondary care.
  • Evaluation of new approaches for the supply of gluten-free food on prescription suggests pharmacy supply schemes provide a better, more cost effective service.
  • New clinical and service recommendations should rebalance the whole coeliac disease service utilising secondary, primary and pharmacy care professionals more efficiently, putting the patient at the centre with self care given greater prominence.

Opportunities for Savings

  • New guidelines on diagnosis in children and young adolescents if implemented properly will safely reduce the number of endoscopic investigations required in children.
  • Moves to pharmacy supply for gluten-free prescriptions should result in considerable savings of 20-40%.

Quality Measures

  • Improved misdiagnosis with IBS rates.
  • Time to diagnosis reduced.
  • Improved EuQOL measures.

Social Policy & Understanding

  • The potential for a greater emphasis on self management and empowerment of patients within primary care, in close collaboration with the charity sector could result in a better informed individual, who has greater control of their own care and a more rapid response to any concerns.
  • Changes to patient pathways must be accompanied by investment in access to the right expertise. For example, if such a service were provided in primary care, this would require access to GPs and dietitians with a special interest in coeliac disease.
  • Awareness of coeliac disease and the gluten-free diet among the general public is poor. Greater understanding and better food labelling, including restaurant meals, would help address issues around social isolation resulting in anxiety/depression for people with coeliac disease.