Could coeliac disease be the cause of my symptoms?
Coeliac disease is a condition where the immune system is activated by gluten in the diet, which leads to inflammation and damage to the lining of the gut. Coeliac disease is common, affecting around 1% of the UK population, however up to two-thirds of patients with the condition do not know that they have it. Why are there so many patients who are undiagnosed with coeliac disease?
First, for a long time doctors thought that coeliac disease was predominantly a disease of children. It is only in the past 20 years or so that we have realised just how commonly coeliac disease affects adults. My clinical practice mainly focuses on adults and adolescent patients, and we commonly diagnose adults with coeliac disease of all ages. Most commonly coeliac disease presents in adults in the teens, 20s, and 30s, however we often diagnose patients with the condition well into later life. Some of these patients will have had coeliac disease for many years, but others develop coeliac disease for the first time in adulthood, for reasons we don’t fully understand.
Second, we have increasingly recognised that coeliac disease can cause a really wide range of gastrointestinal issues. Traditionally, we thought that coeliac disease caused bad diarrhoea and malabsorption, so-called ‘classical’ coeliac disease. However, the pattern that I most commonly see is patients with a range of non-specific symptoms that would fit within the criteria for irritable bowel syndrome. This can include problems like abdominal bloating, distension, cramping, pain, diarrhoea, constipation, or an alternating bowel habit. Often patients have had symptoms for many years before they are tested for the condition. It is really important to consider the diagnosis, indeed there are recommendations that all patients with possible IBS are tested for the condition.
Third, we now realise that many patients with coeliac disease present with problems not directly related to the gut. The most common symptoms I see in my practice are severe fatigue and brain fog, which are really common symptoms of coeliac disease at diagnosis. We don’t really understand what drives these symptoms, but it is probably a mix of the inflammation of the disease itself, and the vitamin deficiencies that accompany it. Vitamin and mineral deficiencies are another common presentation, and any person with issues with low iron, B12, folate, or vitamin D should be considered for coeliac testing. Bone issues like osteopenia and osteoporosis are also common in coeliac disease, related to issues with calcium and phosphate absorption. Other symptoms that can be a sign of coeliac disease are recurrent mouth ulcers, some neurological issues, and a type of severely itchy rash called dermatitis herpetiformis.
Thankfully awareness amongst both patients and clinicians about coeliac disease is increasing, and more people are being tested and diagnosed. Early diagnosis means early treatment, which can both improve patients’ symptoms and quality of life, and reduce their risk of complications of coeliac disease. If you have symptoms that could be related to coeliac disease, do see your doctor for the appropriate testing, or see a gastroenterologist with a specialist interest in the condition.