Imagine you’re a person with a gastrointestinal disease. Perhaps you have inflammatory bowel disease and are going through a flare-up, or you have irritable bowel syndrome, which means you experience gut symptoms such as bloating without any associated inflammation.
Either way, you might feel like your bowels are not your friend. You get pain and cramping in your abdomen so severe that you need to crouch over in a fetal position until it passes. You get so bloated after eating that your clothes no longer fit, and this can last hours.
You might live in a constant state of diarrhoea or constipation. When you empty your bowels, you might notice a dark red stickiness in your stool, meaning you had some bleeding in your bowel.
Now, imagine that you learn there might be a way to manage these symptoms through dietary changes. You start restricting some foods and notice an improvement. Maybe the more you restrict the more you start improving.
But these restrictions might be causing other issues, such as nutritional deficiencies or undesired weight loss.
How far would you go? Would you continue your food avoidance, even if medical professionals advise against it?
Orthorexia or avoidant restrictive food intake
This type of restriction is becoming known as a new type of eating disorder. Researchers haven’t yet agreed on whether this should be classified as either “orthorexia nervosa”, or “avoidant restrictive food intake disorder” (ARFID).
Orthorexia refers to an unhealthy, or extreme, obsession with eating healthy food. ARFID refers to a fear of eating specific foods, whether due to sensory issues or potential negative impacts of eating that food. Sometimes in children, ARFID is confused for fussy eating.
Another difference is that orthorexia has been linked to longer-term fears of eating food (for example, increasing risk of getting a chronic disease), but ARFID is linked to short-term fears (for example, risk of choking).
While orthorexia is still a slightly vaguer term, ARFID has officially been recognised as an eating disorder in the most recent Diagnostic and Statistical Manual of Mental Disorders (DSM-5), which is used by psychiatrists to diagnose psychiatric disorders.
Symptom management might be the cause
Disordered eating can develop as a way to manage disease symptoms. About 43 percent of young people with irritable bowel syndrome aged between 15-21 said they didn’t eat when they were hungry because they wanted to avoid getting gastrointestinal symptoms.
Four recent studies of people with irritable bowel syndrome found that those who had worse symptoms had more disordered eating traits, and the worse someone’s symptoms were, the more severe their disordered eating was (study one, study two, study three, study four).
How common is it?
There have been many recent studies that have aimed to find out the prevalence of disordered eating in people with gastrointestinal diseases. Between 13-23 percent of people with gastrointestinal diseases exhibited disordered eating across four different studies (study one, study two, study three, study four).
But is this just normal symptom management or disordered eating?
Some might see diet management of gastrointestinal diseases as an overall positive thing, especially if severe symptoms can be reduced.
While symptom management is of course important, this can fall into disordered eating when the food avoidance surpasses what a clinician would recommend, whether in the number of foods restricted, or how long the person is restricting this food for.
Long-term high levels of food restriction can lead to nutritional deficiencies, which in turn can cause other diseases such as anaemia, osteoporosis and malnutrition. People with ARFID have a 60 percent risk of malnutrition.
What needs to be done
Clinicians who treat people with gastrointestinal diseases should be aware that people with severe symptoms could be at risk of developing disordered eating.
Irritable bowel syndrome, in particular, is often managed through diet. Researchers have developed a guide for clinicians aiding in the management of irritable bowel syndrome. The recommendations include:
Involve a dietitian to help with diet management of symptoms, because people who self-manage their diet are at higher risk of disordered eating.
Screen for disordered eating risk or behaviours during the first visit with the person who has irritable bowel syndrome.
If the person seems to be at higher risk of disordered eating, then involve a psychologist in their disease management.
While this article has used gastrointestinal diseases in the examples above, this type of disordered eating might also be linked to other diet-related chronic diseases.
Some research has found that 65.5 percent of people with type 2 diabetes may have disordered eating, but this needs to be further studied.
Whether disordered eating relating to chronic disease symptom management should be classified under orthorexia or ARFID remains to be decided.
Either way, the risk of disordered eating in people with chronic diseases is becoming more prevalent across new studies, and should not be ignored.
If this article has raised issues for you, or if you’re concerned about someone you know, contact your local health provider.
Nessmah Sultan is a PhD student and gut health dietitian at Monash University. Her research primarily relates to indices of gastrointestinal health, including the management of disorders of the gut-brain interaction and exploring the impact of nutritional intake on the gut-brain connection.
