It’s not often I admit when I’m wrong, but in the interest of personal growth I thought I’d give it a try. And where better to paint a picture of my inadequacies than all over the chuffing internet? There was a time when I believed that every person with an eating disorder who believed they had a food intolerance was – for want of a better term – full of shit. Having lived with a small army of eating disorder patients for six weeks, each one of them with their own ‘unique dietary needs’, I’d seen every damn trick in the book. An ‘intolerance’ was just another tool in the illness’ armoury, as far as I was concerned. Towards the end of my stay in hospital, I began to notice something bizarre about these self-diagnosed intolerances – they did seem to trigger cause real symptoms. But only when patients were anxious about eating whatever it was that caused the ‘symptoms’ (bread mainly, obvs). So, were they all simply suffering psychologically-induced pain, or were their bodies genuinely rejecting food?
The answer is probably the former. Studies show that the nocebo effect is hugely powerful – when you believe something will give you an upset stomach, the anxiety triggers gut disturbances and you do feel genuine symptoms. However, I was wrong in thinking this is the case for ALL eating disorder sufferers. Later conversations with Nick Trott, Gastroenterology Dietitian at Sheffield Teaching Hospital, put me well in my place. Whilst there is a big crossover with pseudo intolerances and eating disorders, he explained to me, being funny about food doesn’t grant you immunity to actual, life-altering intolerances. Indeed, he’s seen the patients that prove it. A few weeks back I received a letter from a reader, who asked if I knew of any advice for recovering from ED with a food intolerance. I fought my natural instinct to respond ‘ARE YOU SURE’ and instead contacted my good friend and tummy expert, Nick Trott.
Q: Is there a correlation between eating disorders and conditions that affect the gut & involve dietary interventions?
A: It is well-established that there is an association between having an eating disorder or disordered eating and what are known as Functional Gut Disorders (FGDs). This includes conditions like IBS but also reflux, dyspepsia and motility issues such as constipation and diarrhoea. Its seems that the effect can go in both directions, so having an eating disorder can increase the risk of someone developing an FGD. But FGDs themselves may predispose some people develop eating disorder behaviors. In people with IBS there has been a recent increased recognition of the potential risk two eating disorders: Orthorexia Nervosa where there as an obsession with eating only foods that are considered healthy (more commonly known as clean eating). Avoidant Restrictive Food Intake Disorder (ARFID) where the consumption of certain foods is limited based on a food’s appearance, smell, taste, texture, brand, presentation, or a past negative experience with the food. Not all people with IBS have an eating disorder and there are well established dietary treatments for IBS that can really improve peoples quality of life, like the Low FODMAP approach which temporarily restricts certain carbohydrates and should only be undertaken with advice from a dietitian (See link to NICE guidance below). However given the potential risks in some people it is vital that people are assessed and treated individually as such dietary approaches will not be suitable for everyone. For people undergoing either inpatient or outpatient treatment for an eating disorder who report functional gut symptoms, it is particularly important to consider non-dietary approaches to management such as Cognitive Behavioral Therapy or Gut Directed Hypnotherapy as well has certain medications.
Q: Roughly speaking, what percentage of people without coeliac disease have gluten-related symptoms due to psychological reasons?
A: Firstly this may seem like stating the obvious but its really important make absolutely sure that people who report gluten-related symptoms don’t have Coeliac disease. We know that Coeliac disease is vastly under diagnosed. If someone has pain, bloating or a change to their bowel habit when they eat gluten containing foods its very tempting to think ‘I’ll try going gluten-free’. Ironically that’s worse thing they can do. We know that people who have IBS-type symptoms are four times more likely to have coeliac disease than the general population. I’d encourage people to remain on a gluten containing diet and ask for a coeliac blood test from their GP. Coeliac UK have great information on testing here. https://isitcoeliacdisease.org.uk/ . Interestingly, studies over the last few years have shown that when people report gluten-related symptoms are given gluten in a ‘blinded fashion’ (ie they don’t know they are eating it) only about 16 per cent of people show gluten specific symptoms.
There are two likely reasons for this. One is the concept of the ‘nocebo’ effect. This happens when people have symptoms because of negative expectations of how a food might effect them. In studies in Non-Coeliac Gluten Sensitivity up to 40 per cent of people may have this response. However its important not to use the nocebo effect to dismiss people who report troublesome symptoms, Dietitians can work with people individually to broaden their diet, whilst controlling symptoms and improving their quality of life. Another important reason is the grains that contain gluten also have other proteins and carbohydrates that may drive symptoms. We know there are some people who have more sensitive guts. In these people certain carbohydrates that are present in wheat and other grains, particularly one know as Fructans can cause bloating and gut pain. For this reason its important not too fully throw the gluten free diet under the bus. We find a modified gluten free diet may be beneficial for some people as it’s a fairly straight forward way to reduce exposure to fructans. However I can’t emphasise enough that this approach should only be undertaken after other diagnoses been excluded and with advice from a dietitian to ensure that the diet is balanced, not socially restrictive and foods are only restricted as necessary.
Q: If someone has an eating disorder or suffers with disordered eating, how do you go about testing them for coeliac disease without worsening food anxieties?
A: Coeliac disease is an autoimmune condition that affects around one in hundred people globally. In people with the condition, gluten actually damages the gut and can cause vitamin deficiencies, reduced bone density and an increase risk of other autoimmune conditions. A gluten-free diet is therefore a therapeutic necessity for people who have the condition. In someone who has an eating disorder and a diagnosis of coeliac disease it is essential to work in a way that supports recovery. Although the gluten-free diet can be restrictive it promotes gut healing and improves the quality life in the majority people who have coeliac disease. In that sense, unrecognised coeliac disease in a person with an eating disorder may actually hinder their recovery. Initial screening for coeliac disease just involves a simple blood test. In some patients this along with the genetic test may be enough to confirm the diagnosis. It is also standard practice to do a biopsy of the small intestine as well, although this can sound invasive, the technique has vastly improved in recent years.
Q: Are there ways those with gluten intolerance or Coeliac can challenge their food anxieties without making themselves sick?
A: The important thing here is to separate out gluten sensitivity/intolerance from coeliac disease. Although we are yet to fully understand what is driving the symptoms people experience when they report gluten sensitivity, they do not experience any damage to their gut. In any dietary treatment for functional gut disorders, an essential part of the approach is establishing tolerance levels and re-challenging these over time. This could mean gradually increasing the quantity of gluten containing foods, eating them in isolation or as part of a meal and trying smaller portions of these foods distributed over a whole day. For people who continue to have symptoms despite following a gluten-free diet they may benefit from a dietitian-led Low FODMAP approach.
In Coeliac disease, it is essential that people aim to avoid all sources of gluten. However remember that eating gluten ‘accidentally’ is not uncommon. Eating in restaurants and cafes is often the most common place someone with coeliac disease maybe be so-called ‘glutened’ – but it is worth acknowledging that the increased recognition of disease and legislation has reduced this risk. Support from a dietitian and a better understanding what the gluten-free diet involves may reduce the risk of dietary restriction as people are more aware of the range of foods they can actually eat! Also family and social support networks are important and involving relatives and friends in education and consultations can help. As can active involvement in national and local coeliac support groups such as Coeliac UK. However, for some people it may be necessary and very helpful to involve support from a psychologist within interest in gut issues and conditions. For more support visit NICE or Beat’s website.
