I’m a GP – three dangerous lies to ignore about gluten

Coeliac disease has been overshadowed by a culture war around gluten. It is too often blurred with wellness trends, food intolerance, or the idea that giving up wheat is simply a better lifestyle choice. The reality, however, is more serious. Coeliac disease is a true autoimmune condition, not a preference. It is common, and currently estimated to affect one per cent of the UK population alone – over 100 million people worldwide. It’s also two to three times more common in women. Concerningly for patients and GPs like me, cases appear to be on the rise – with some estimates suggesting an increasing incidence of 7.5 per cent per year. Coeliac disease is a condition where eating gluten – a protein in wheat, barley and rye-based foods – triggers a response where the immune system mistakenly attacks the body’s own tissues. This generates inflammation of the lining of the gut and can cause symptoms like diarrhoea, abdominal pain, bloating, nausea and vomiting. Shorts But whilst we’re getting better at recognising it through readily available blood tests, this is unlikely to be the sole reason why cases are rising. The condition has a strong genetic basis and is more common in people with other autoimmune conditions, like Type 1 diabetes. Researchers are investigating whether environmental factors associated with modern lifestyles – including use of antibiotics, gastrointestinal viruses and the composition of the gut microbiome – may influence how the immune system responds to gluten. The degree of gluten exposure in childhood might also be a contributing factor. Research has identified several possible associations, but is yet to pinpoint a clear cause. But its effects are much more wide-ranging than many realise. Gluten-generated autoimmune responses mean that the gut may struggle to absorb nutrients and minerals effectively, leading to a wider range of complications across the body. Take osteoporosis, where bones become more porous and fragile – as a result of poor calcium and vitamin D absorption. Another is extreme tiredness, reflecting several nutrient deficiencies, including folate, vitamin B12, and iron – which can lead to anaemia: a lack of red cells in the bloodstream. And there’s also infertility, neuropathies, and menstrual disorders; the list of complications arising from malabsorption is long. This is why we shouldn’t be overlooking coeliac disease. Sometimes the symptoms are vague: tiredness, weight loss, brain fog, and even mouth ulcers, which can also be a feature of many other diseases. I consider testing for coeliac disease in patients presenting with both gastrointestinal symptoms and those experiencing persistent, less specific symptoms, such as fatigue. The spectrum of presentation is remarkably broad – I’ve seen patients in whom a diagnosis of coeliac disease was entirely predictable, given the descriptions of their symptoms and diet. But I’ve also been surprised by other patients with a positive result: after being diagnosed with a nutritional deficiency, those with mild or vague symptoms – and even some with no symptoms at all. Many patients I speak with are taken aback by their diagnosis. One particular case is much closer to home. My wife was diagnosed with coeliac disease in her late teens. Once she removed gluten from her diet, her symptoms resolved completely, making a dramatic improvement to her life. But getting to that consultation was the first hurdle. One of the most difficult things about coeliac disease is that reactions to gluten are not always straightforward. With repeated exposure, symptoms can sometimes become milder, less distinct, or easier to misread. But withholding gluten for a period of time and then reintroducing it can mean a reaction that is much more profound and unmistakable. In our house, they’re referred to as “GRIs” – or gluten-related incidents: spectacular episodes of extreme nausea and vomiting upon eating even the smallest, trace amounts of gluten. It’s painful and miserable, and we go to great lengths to avoid accidental contamination.Despite the concerning impact on our health, there are still many dangerous myths that persist about the disease. Here are some of the most common. Myth one: you can’t develop coeliac disease later in life The peak incidence for children is usually early, in preschool years – but in adults the peak usually appears between ages 40 and 60. This is rather alarming, since it represents either a greater risk in later life, or else the possibility that many individuals have gone undiagnosed for years. The oldest patient I’ve seen with a new diagnosis was in their seventies, and it seems unlikely that it newly arose that late. There’s also a serious side to undiagnosed or unmanaged coeliac disease – described in case reports as coeliac crises. These emergency presentations arise when the body becomes overwhelmed by inflammation – causing severe diarrhoea, dehydration and electrolyte disturbances. This can be extremely dangerous, even life-threatening – and require hospital treatment. Luckily, they are rare occurrences, but an important reminder of why persistent symptoms or nutrient deficiencies should be investigated by a doctor. Myth two: avoiding wheat will cure you The treatment of coeliac disease has one solid and consistent foundation: a strict gluten-free diet. Wheat, barley and rye all contain gluten – though wheat is probably the most ubiquitous, since it constitutes standard flour-based products, including bread, cakes, pastries and biscuits. But gluten can also appear in less obvious places – dishes containing soy sauce are one example – meaning Chinese, Thai and Japanese cuisine needs careful scrutiny. Gluten can also turn up in stock cubes, marinades, dressings, sausages and burgers. Checking the dietary and ingredient labels becomes paramount. My wife follows this guidance strictly, and although my daughter and I do not have coeliac disease, we generally eat gluten-free family meals, using gluten-free flour, pasta and stock – and tamari soy sauce, which is brewed without wheat. We do have separate bread and baked products, but have a rigorous rule as to which sides of the toaster we use, to avoid cross-contamination from surfaces. Myth three: it’s just an intolerance But there is often confusion between coeliac disease and other sensitivities to gluten – sometimes referred to as wheat allergies and non-coeliac gluten sensitivity. Although there is a medical basis for these gluten-related conditions, they are distinct from coeliac disease, which has specific diagnostic tests and causes intestinal damage. Non-coeliac gluten sensitivity remains rather harder to define because there is no reliable blood testing, and symptoms can overlap with irritable bowel syndrome (IBS). In some instances, the trigger might not be gluten, but other wheat constituents like fructans. The staggering fact is that the risk of symptoms and complications from coeliac disease can be greatly improved, even potentially eliminated, by a strict gluten-free diet. But getting to this point is underpinned by diagnosis, and diagnosis by awareness. See your own GP if any of this sounds familiar – and before removing gluten from your diet, as testing is most reliable if you’re still eating it.