WIREDGOV

The National Institute for Health and Clinical Excellence (NICE) has recently (27 May 2009) issued a guideline to improve the recognition and diagnosis of coeliac disease. Coeliac disease is a condition in which the immune system in a person’s intestine (gut) reacts to a protein called gluten. The immune reaction makes part of the gut inflamed, which can make it difficult for the person to absorb nutrients from their food. Coeliac disease can cause a wide range of symptoms in the digestive system (such as indigestion, diarrhoea or constipation) and in the rest of the body (such as tiredness, weight loss and bone thinning).

The disease is believed to be present in up to 1 in 100 of the population, although only about 10–15% of people with the condition are clinically diagnosed. Many of the remainder may be well, but many will have chronic problems such as lethargy, or gastrointestinal symptoms - these can result in chronic ill health and often extensive medical investigation without a definite diagnosis. For the first time, the guideline provides a clear set of symptoms, signs, and types of presentation or conditions that should alert healthcare professionals to consider the presence of coeliac disease, and sets out a pathway of investigation when making the diagnosis.

Key recommendations include:

• Offer serological testing to children and adults with any of the following signs, symptoms and conditions:

Signs and symptoms

- Chronic or intermittent diarrhoea

- Failure to thrive or faltering growth (in children)

- Persistent or unexplained gastrointestinal symptoms including nausea and vomiting

- Prolonged fatigue

- Recurrent abdominal pain, cramping or distension

- Sudden or unexplained weight loss

- Unexplained iron-deficiency anaemia

Conditions

- Type 1 diabetes

- Autoimmune thyroid disease

- A skin disorder called dermatitis herpetiformis

- Irritable bowel syndrome

- Close relatives (parents, children or brothers and sisters) with coeliac disease

• Before serological testing inform people (and their parents and carers as appropriate) that
  - testing is accurate only if they follow a gluten-containing diet
  - when following a gluten-containing diet, they should eat some gluten in more than one meal every day for at least 6 weeks before testing
  - they should not start a gluten-free diet until diagnosis is confirmed by intestinal biopsy
• Inform people (and their parents or carers as appropriate) that a delayed diagnosis of coeliac can result in:
  - continuing ill-health
  - long-term complications, including osteoporosis and increased fracture risk
  - growth failure, delayed puberty and dental problems (in children)

Dr Fergus Macbeth, Director of the Centre for Clinical Practice at NICE says: “For the first time this guideline provides healthcare professionals with a tool to help diagnose and manage coeliac disease, based upon the best available evidence. Providing clarity to healthcare professionals will enable them to provide better support to people with coeliac disease which in turn will give them more confidence to cope with living with the condition.”

Peter Howdle, Professor of Clinical Medicine and Guideline Development Group chair says: “Coeliac disease often goes unrecognised - as a result, people may present to primary and secondary care on many occasions and with a range of symptoms before diagnosis. Coeliac disease is not a condition that will go away but in every case we can ensure that individuals receive a definitive diagnosis and subsequent support to manage the condition through a gluten-free diet. I hope that these guidelines will give people with coeliac disease the confidence to know that the condition can be managed and they do not need to suffer in silence.”

Dr Julian Walters, Consultant Gastroenterologist and Guideline Development Group member says: “This guideline will go a long way to improve the current rates of diagnosis of coeliac disease. Many people have felt concerned that their condition has not been properly investigated. This guideline will act as a tool for healthcare professionals and provide clarity on how the disease should be recognised and which people should be assessed for the disease. Under this guideline, healthcare professionals will carry out a simple, sensitive and specific assessment in every case in order to identify whether coeliac disease is the underlying cause of the patient's condition.”

Dr John O’Malley, General Practitioner and Guideline Development Group member says: “On a regular basis I talk to people who have symptoms of coeliac disease but as they have lived with them for so many years, they consider these ‘normal’. I am pleased that from now on, anyone who approaches their doctor with symptoms of coeliac disease will be treated as having a real illness. If patients get a positive diagnosis, they will feel reassured that they can start actively managing the symptoms and improve their quality of life.”

Norma McGough, patient representative and Guideline Development Group member says: “For a long time coeliac disease has been side-stepped and incorrectly diagnosed as other digestive conditions such as irritable bowel syndrome. I hope this guideline will raise awareness of the condition among the general public as well as among healthcare professionals so that more people approach their doctor for a definitive diagnosis. This will lead to much ill-health being alleviated.”