Calls to improve Coeliac diagnosis

A consultant gastroenterologist at the Royal Hallamshire Hospital and the University of Sheffield, and chair of Coeliac UK’s Health Advisory Council, Professor David Sanders is highlighting the need to improve detection and treatment of Coeliac disease. The condition, which is caused by an autoimmune response to gluten, damages the lining of the small intestine and, if left untreated, can lead to serious complications. Speaking to The Clinical Services Journal, Prof. Sanders said that although awareness of the condition among GPs and clinicians has improved in recent years, many cases continue to go undetected: “Screening studies suggest that 1 in 100 people in the UK have Coeliac disease, yet only 10% to 15% of these have been diagnosed. “In Sheffield, for example, there are more than a thousand patients with the condition (the largest number of detected Coeliac cases in the UK). The city has a total population of between 600,000 and 700,000. Therefore, where are the rest of the 5,000-6,000 patients with Coeliac disease? This tells us that we are still not testing enough in primary and secondary care. I am not an advocate for screening but we need to actively case find,” he commented.

Symptoms

Symptoms can include bloating, abdominal pain, nausea, constipation, diarrhoea, wind, tiredness, anaemia, headaches, mouth ulcers, recurrent miscarriages, weight loss (but not in all cases), skin problems, depression, joint or bone pain and nerve problems. “Obtaining a correct diagnosis can be extremely difficult with an average length of time to diagnosis of 13 years. One of the difficulties is the fact that patients often present with symptoms that are quite subtle, such as dyspepsia or stomach ache, or they may be misdiagnosed with irritable bowel syndrome (IBS). “However, patients may also attend with other non-gastrointestinal presentations,” Prof. Sanders advised. “This may include autoimmune diseases, such as thyroid disease; type 1 diabetes; reduced bone mineral density; neurological problems – such as peripheral nerve damage and difficulty walking (particularly if they have ataxia damage to their cerebellum); or they may present with anaemia. In fact, anaemia is the second most common symptom,” he continued. Other significant clinical presentations may include the skin condition, Dermatitis Herpetiformis (DH), which results in itchy, red raised patches. Elbows, knees and buttocks are most commonly affected, although any area of skin can be affected. Although patients with DH may not exhibit gut related symptoms, most individuals with the skin condition experience the same intestinal damage as seen in typical Coeliac disease. Studies also show that if a family member has the condition, there is a 1 in 10 chance of a close relative developing Coeliac disease. While genetic factors predispose individuals to the condition, the symptoms can be triggered at any age. It has been suggested that a stressful event, such as pregnancy, childbirth or a bout of gastroenteritis, may be a possible trigger in susceptible people. Prof. Sanders pointed out that the average presentation age is now 40-60 years old: “We have come a long way from the diagnosis of the small child with malabsorption. For every seven adult cases, there will be one paediatric case. This is a disease that is very much an adult disease that presents in an extremely varied manner. Healthcare professionals need to become more aware of this and be alert to the possibility of Coeliac disease in patients presenting with relevant symptoms.”