Can Medicine Be Cured Read online

  Dicke moved to Utrecht, and formed a research partnership with van de Kamer, who had developed a method for measuring the fat content of faeces. This was a means of quantifying the malabsorption of food from the intestine in these children: the greater the stool fat content, the greater the malabsorption. He began a series of clinical trials of wheat exclusion, and showed that coeliac children got better on this diet. By measuring faecal fat content before and after wheat exclusion, he produced objective evidence of the benefit of this diet. Later, he showed that gluten (the protein which gives bread its elastic quality) was the component in wheat responsible for the disease. Dicke wrote a paper describing his findings and sent it to one of the main American paediatric journals. He did not receive even an acknowledgement, and the manuscript wasn’t sent out for review. Meanwhile, a research group at Birmingham University and the Birmingham Children’s Hospital had heard of Dicke’s work and wanted to test his findings. One of that group, Charlotte Anderson, visited Dicke to see his studies of coeliac children at first hand. He went out of his way to help Anderson with her research; she later paid tribute to ‘his old-world gentility’. Dicke had formally written up his work for his doctoral thesis, presented to the University of Utrecht in 1950. He also sent off a paper to another journal – the Swedish publication Acta Paediatrica Scandinavica. This paper was accepted, but by the time it eventually appeared in print, the Lancet had published a paper by the Birmingham group confirming Dicke’s findings. Dicke died young, at fifty-seven, after a series of strokes.

  When I began my research on coeliac disease in the 1980s, it was a well-recognized, although relatively uncommon, condition: about 1 in every 2,000 people in Britain were diagnosed with it. It was then much more prevalent in Ireland, particularly in Co. Galway, where the disease was diagnosed in 1 in every 300. In retrospect, this was at least partly due to the fact that the professors of medicine and paediatrics at University College Galway at that time both had a special interest in the condition and actively sought it out. Making a formal diagnosis of coeliac disease in the 1980s was difficult, requiring the prolonged and distressing Crosby capsule intestinal biopsy. (The patient had to swallow a steel bullet – the capsule – attached to a hollow tubing, and wait for at least two hours for the capsule to reach the small intestine.) Gradually, however, the diagnosis became easier. By the late 1980s, biopsies could be obtained using an endoscope, in a procedure that took five or ten minutes; in the 1990s, blood antibody tests became widely available, and were shown to be highly accurate. The ease of these diagnostic tests, along with greater awareness of the condition, led to a steep rise in diagnosis of coeliac disease during the 1990s and 2000s: about 1 per cent of the British and Irish population are now thought to have coeliac disease, although many – possibly most – remain undiagnosed. Coeliac disease is no longer regarded as primarily a disease of children: the diagnosis can be made at any age. Several screening studies (using blood antibody tests) across Europe and the US show that the prevalence of coeliac disease is somewhere between 1 and 2 per cent of the population. The treatment – a gluten-free diet – is lifelong and effective.

  The patients I diagnosed with coeliac disease in the 1980s were often very sick. Nowadays, most adults diagnosed with the condition have minimal or no symptoms. The ease of diagnosis and increased public awareness led many people with various chronic undiagnosed ailments to seek tests for coeliac disease. These ‘medically unexplained’ conditions included IBS, chronic fatigue and fibromyalgia. A few did indeed have coeliac disease, but most didn’t. Undaunted by negative tests for coeliac disease, some – encouraged by stories in the media – tried a gluten-free diet, and felt better. Their doctors attributed this to suggestibility and the placebo effect. Many complementary and alternative medicine practitioners, however, thought it was a real phenomenon, and began to recommend a gluten-free diet for all sorts of chronic ailments. These patients were not satisfied with reassurances along the lines of ‘well, you’re not coeliac but if it makes you feel better, give the diet a go’, and demanded a formal diagnostic label for what ailed them. As the bitter history of chronic fatigue syndrome/ME has shown, patients with ‘medically unexplained’ symptoms are often resistant to psychological formulations. Our contemporary culture, for all its superficial familiarity with psychology and its vocabulary, remains uncomfortable with the notion of ‘psychosomatic’ disease. Many of my IBS patients prefer gluten sensitivity to ‘stress’ as the explanation for their symptoms, just as some people with chronic fatigue believe they have an infection with the bacterium that causes Lyme disease. Doctors now spend much of their time manoeuvring the ever-widening gap between their patients’ beliefs and their own.

  By the new millennium, coeliac disease researchers had run out of new ideas: the disease was easily diagnosed and easily treated – what was left to know? Then along came a new opportunity called non-coeliac gluten sensitivity. In February 2011, fifteen coeliac disease researchers from around the world met at a hotel near Heathrow Airport. They were keen to give this phenomenon of self-diagnosed gluten sensitivity some form of medical credibility, or, as they put it, to ‘develop a consensus on new nomenclature and classification of gluten-related disorders’. They were not shy about the commercial agenda: ‘The number of individuals embracing a gluten-free diet appears much higher than the projected number of coeliac disease patients, fuelling a global market of gluten-free products approaching $2.5 billion in global sales in 2010.’ The meeting was sponsored by Dr Schär, a leading manufacturer of gluten-free foods. A summary of this meeting was published in the journal BMC Medicine in 2012. Non-coeliac gluten sensitivity now became an officially recognized part of ‘the spectrum of gluten-related disorders’. Dr Schär must have been pleased with this consensus, which led to several studies on non-coeliac gluten sensitivity over the next few years. Most of these studies were poorly designed, badly written up, and published in low-impact, minor journals, the sort of work that John Ioannidis would eviscerate with relish. One of the very few well-designed studies, from Monash University in Melbourne, published in the prestigious US journal Gastroenterology, found that people with self-reported gluten sensitivity did not react to gluten (disguised in pellets) any more than they did to a placebo.

  Despite these inconclusive studies, many review articles appeared in the medical journals describing the symptoms of non-coeliac gluten sensitivity and how to diagnose it. Several of these papers appeared in the journal Nutrients, which, for a period, featured in a list of predatory journals. Professor Carlo Catassi, an Italian paediatrician, has published several papers on non-coeliac gluten sensitivity, mainly in Nutrients. He is probably the most prominent name associated with the condition and has received ‘consultancy funding’ from the Dr Schär Institute. In a 2015 review article for the Annals of Nutrition and Metabolism, Catassi listed the following as clinical manifestations of non-coeliac gluten sensitivity: bloating, abdominal pain, lack of wellbeing, tiredness, diarrhoea, nausea, aerophagia (swallowing air), gastro-oesophageal reflux, mouth ulcers, constipation, headache, anxiety, ‘foggy mind’, numbness, joint and muscle pain, skin rash, weight loss, anaemia, loss of balance, depression, rhinitis, asthma, weight gain, cystitis, irregular periods, ‘sensory’ symptoms, disturbed sleep pattern, hallucinations, mood swings, autism, schizophrenia, and finally – my favourite – ingrown hairs. In a Disclosure Statement, we are told that ‘the writing of this article was supported by Nestlé Nutrition Institute’.

  Professor Catassi is the first author, too, of a paper entitled ‘Diagnosis of non-coeliac gluten sensitivity (NCGS): the Salerno Experts criteria’, also published in Nutrients. In October 2014, a group of thirty ‘international experts’ met in Salerno, Italy, ‘to reach a consensus on how the diagnosis of non-coeliac gluten sensitivity should be confirmed’. The meeting was again funded by Dr Schär. Only six of the fifteen experts who met at Heathrow in 2011 made it to Salerno: was there a schism in the church of gluten sensitivity? The experts gave us crite
ria to diagnose a condition that probably doesn’t exist. Non-coeliac gluten sensitivity is thus a model for what might be called a post-modern disease. It does not have a validated biological marker (such as a blood test or a biopsy), and the diagnosis is made on the basis of a dubious and highly arbitrary symptom score. Its ‘discovery’ owes much to patient pressure and the suborning of expert opinion by commercial interests. I found a picture online of the experts gathered at Salerno, and was reminded of a fresco in the Sistine Chapel depicting the first Council of Nicea in AD 325. The council was convened by the emperor Constantine to establish doctrinal orthodoxy within the early Christian Church. The industry-sponsored get-together in Salerno had similar aims. Why did these experts attach their names to a consensus on how to diagnose this pseudo-disease? Unlike Willem-Karel Dicke, a clinical doctor who stumbled on an idea he desperately wanted to test, the Salerno experts are typical contemporary biomedical researchers: their motivation is professional, rather than scientific. Few share Dicke’s qualities of modesty, reticence and ‘old-world gentility’. Their aim is expansionist: the establishment of a new disease by consensus statement, the Big Science equivalent of a papal bull. Non-coeliac gluten sensitivity has been decreed by this edict, just as papal infallibility was decreed by the First Vatican Council in 1870. The creation of this new disease benefits the researchers, who now claim many more millions of ‘patients’; it benefits the food industry, with dramatic rises in sales of ‘free-from’ foods; and it benefits people with psychosomatic complaints, who can now claim the more socially acceptable diagnosis of non-coeliac gluten sensitivity. If so many people are benefiting from all of this, why worry about science, or truth?

  Consensus statements have been part of the medical academic landscape since the 1970s, and frequently mocked as GOBSAT (‘good old boys sat around a table’). The American Psychiatric Association decided in 1973 that homosexuality was no longer a disease: this depathologization was declared by consensus, after a vote among the association’s members. Although it is unlikely, they could just as easily redeclare it as a disease. Petr Skrabanek wrote on the phenomenon of consensus conferences in 1990:

  the very need for consensus stems from lack of consensus. Why make an issue of agreeing on something that everyone (or nearly everyone) takes for granted? In science, lack of consensus does not bring about the urge to hammer out a consensus by assembling participants whose dogmatic views are well known and who welcome an opportunity to have them reinforced by mutual backslapping. On the contrary, scientists are provided with a strong impetus to go back to the benches and do more experiments.

  Consensus conferences very often facilitate the aims in particular of pharma, by expanding the pool of ‘patients’ who might need their product. Consensus statements, for example, set the levels above which cholesterol levels and blood pressure is ‘abnormal’ and must be ‘treated’. Careful selection of participants guarantees the ‘right’ consensus. In the ‘hierarchy of evidence’ espoused by evidence-based medicine, however, consensus statements are near the bottom, slightly above ‘a bloke told me down the pub’. ‘The consensus of experts’, remarked Alvan Feinstein, ‘has been a traditional source of all the errors that have been established throughout medical history.’ The British mathematician Raymond Lyttleton coined the term ‘the Gold Effect’ (after his friend, the Austrian physicist Thomas Gold) in 1979. In Follies and Fallacies in Medicine (1989), James McCormick and Petr Skrabanek explained how the Gold Effect transforms belief in some idea into certainty: ‘Articles on the idea, initially starting with “Evidence has accumulated”, rapidly move to articles that open “The generally accepted”, and before long to “It is well established”, and finally to “It is self-evident that”.’

  Although the coeliac disease experts accepted commercial sponsorship and then obligingly legitimized the highly dubious entity that is non-coeliac gluten sensitivity, two entrepreneurial American doctors, William Davis, author of Wheat Belly (2011), and David Perlmutter, author of Grain Brain (2013), took the public awareness of gluten to the next level. Their bestselling books contributed substantially to the popular perception of gluten as toxic not just for coeliacs, but for everyone. Davis (a cardiologist) argues that ‘modern’ wheat is a ‘perfect, chronic poison’, that it is addictive and is the main cause of the current obesity epidemic. Perlmutter (a neurologist) claims that ‘modern grains are destroying your brain’, causing not only Alzheimer’s disease, but also ‘chronic headaches, depression, epilepsy and extreme moodiness’. This is, of course, absurd, and completely unsupported by any evidence, but it is a model of restraint compared to Professor Catassi’s list of ‘clinical manifestations of gluten sensitivity’. Perlmutter’s and Davis’s books have sold in their hundreds of thousands, but are dismissed by scientists. Science, however, should be more concerned about the reputational damage inflicted on it by the feverish musings of the Salerno experts.

  All of this has created a whole new market, with new consumers. YouGov, the UK-based market-research firm, produced a report in 2015 called ‘Understanding the FreeFrom consumer’. Gluten-free is not the only ‘free-from’ food: consumers can choose lactose free, dairy free, nut free, soya free and many other products. Ten per cent of the UK population are ‘cutting down’ on gluten; remarkably, two-thirds of those cutting down on gluten do not have a sensitivity, self-diagnosed or otherwise, and are referred to as ‘lifestylers’ by the marketing experts. Lifestylers tend to be young, of high social class, female, vegetarian, regular exercisers, and ‘spiritual but not religious’. The ‘free-from’ food market in Britain is booming, with annual sales of £740 million; gluten-free products make up 59 per cent of it. This market is growing at a rate of roughly 30 per cent annually. Twenty million Americans claim that they experienced symptoms after eating gluten. One-third of adults in the US say they are reducing or eliminating their gluten intake. You can buy gluten-free shampoo and even go on a gluten-free holiday. It is easy to mock this foolishness, and many do: look up J. P. Sears’s ‘How to become gluten intolerant’ on YouTube. Meanwhile, several celebrities, including Gwyneth Paltrow, Miley Cyrus and Novak Djokovic, have proclaimed the benefits of gluten avoidance. ‘Everyone should try no gluten for a week!’ tweeted Miley Cyrus. ‘The change in your skin, physical and mental health is amazing! U won’t go back!’ The gluten-free food market, which had hitherto been a small, niche business, has expanded rapidly over the last several years. In 2014, sales of gluten-free foods in the US totalled $12.18 billion; it has been estimated that the market will grow to $23.9 billion by 2020.

  With the exception of the 1 per cent of the population who are coeliac, there is no evidence that gluten is harmful. There is, however, growing evidence that a gluten-free diet in non-coeliac people may carry a risk of heart disease, because such a diet reduces the intake of whole grains, which protect against cardiovascular disease. Fred Brouns, professor of health food innovation management at Maastricht University, wrote the pithily entitled review ‘Does wheat make us fat and sick?’ for the Journal of Cereal Science in 2013. He examined the claims made against wheat by both William Davis and David Perlmutter – namely, that it causes weight gain, makes us diabetic and is addictive. He addressed also the charge (made by Davis, Perlmutter and the Heathrow experts) that modern wheat contains higher levels of ‘toxic’ proteins. Brouns and his colleagues reviewed all the available scientific literature on wheat biochemistry, and concluded that wheat (particularly whole wheat) has significant health benefits, including reduced rates of type 2 diabetes and heart disease. He found no evidence that the wheat we eat now is in any way different from that consumed during the Palaeolithic era, apart from having higher yields and being more resistant to pests. Genetically modified wheat has not been marketed or grown commercially in any country. ‘There is no evidence’, he concluded, ‘that selective breeding has resulted in detrimental effects on the nutritional properties or health benefits of the wheat grain.’

  Alan Levinovitz, a professor
of religion at James Madison University in Virginia, was struck by the parallels between contemporary American fears about gluten and the story of the ‘grain-free’ monks of ancient China. These early Daoists, who flourished 2,000 years ago, believed that the ‘five grains’ (which included millet, hemp and rice) were ‘the scissors that cut off life’, and led to disease and death. The monks believed that a diet free of the five grains led to perfect health, immortality and even the ability to fly. In his book The Gluten Lie Levinovitz places contemporary American anxieties about gluten in a long line of food-related myths: ‘As with MSG, the public’s expectation of harm from gluten is fuelled by highly profitable, unscientific fearmongering, validated by credentialed doctors. These doctors tap into deep-rooted worries about modernity and technology, identify a single cause of all our problems, and offer an easy solution.’

  Does it really matter if many people adhere to a gluten-free diet unnecessarily? After all, it’s their own choice, and if they’re happy with it, why should we bread eaters fret? The gluten story is a symptom of the growing gap between rich and poor. For most of human history, the main anxiety about food was the lack of it. Now, the worried well regard food as full of threats to their health and are willing to pay a premium for ‘free-from’ products. People who do not have scientific knowledge are likely to take the food industry’s claims at face value, and their children, bombarded with advertising on social media and television, will add to the pressure. When food was scarce, fussiness about it was frowned upon and socially stigmatized because it was wasteful of a precious resource. What used to be simple fussiness has now progressed to self-righteous grandstanding, and self-diagnosed food intolerance is often the first step on the via dolorosa of a chronic eating disorder.