A restrictive eating disorder is best described as the misidentification in the brain of food as a threat. It is a chronic condition and has no cure. However, a successful recovery effort can result in a complete and permanent remission. It is currently defined as mental illness within the Diagnostic and Statistical Manual of Mental Illness (DSM) and psychiatrists are the only health care professionals tasked with the clinical diagnosis that will be accepted by either private or national health insurance providers.
The DSM splits out the restrictive eating disorder spectrum into three main classifications: anorexia nervosa, bulimia and avoidant/restrictive food intake disorder [DSM-V].
Binge eating disorder (not a restrictive eating disorder) has been added to the fifth edition of the DSM. I will have much to say on that topic in future. But for now, BED and NES (night eating syndrome) are not considered standalone eating disorders by expert researchers in the field and they are not neurobiologically related to restrictive eating disorders [AJ Stunkard, TA Wadden [eds], 2004].
While there was a push to pursue a transdiagnostic approach it did not materialize in the DSM-V. Transdiagnosis recognizes the fact that those with restrictive eating disorders can shift from one symptom to another or express several symptoms at once and that these symptoms can also change over time as well.
A transdiagnostic classification (merging all facets of restrictive eating disorder behaviors) would have accurately reflected the clinical evidence that anorexia and bulimia are not two distinct conditions and that several additional restrictive facets are all part of the same neurobiological condition as well [DH Gleaves, 2000; KT Eddy et. al., 2002 and 2008].
“…extreme dietary restraint and restriction, binge eating, self-induced vomiting and the misuse of laxatives, driven exercising, body checking and avoidance, and the over-evaluation of control over eating, shape and weight.”[CG Fairburn, K Bohn, 2005]
The terminology I prefer to use for symptomatology is as follows:
- Avoiding food intake
- Avoiding food intake and experiencing reactive eating sessions in response to starvation*
- Abuse of laxatives, diuretics and purging to try to redress a reactive eating session
- Using exercise to alleviate anxiety associated with eating
- Applying rigid adherence to eating ‘healthy’ or ‘clean’ to alleviate anxiety associated with eating
* “binge eating” is a term I will not use because these sessions never occur in the absence of overall caloric deficiency for those with restrictive eating disorders.
A restrictive eating disorder is an inherited neurobiological condition [K Nunn et. al. 2011; CM Bulik et. al., 2006; M Strober et. al., 2000].
The genetic markers are not fully identified, but the condition usually lies dormant and is triggered by a myriad sociocultural and environmental factor(s) [B Devlin et al., 2002; WH Kaye et. al. 2000; T Wade et al., 1998; P Slade, 2011].
The condition is present in all human populations and even exists in some animals [JL Treasure et. al., 1995; LEA Symons et al., 1981]. In fact, in sheep anorexia is caused by a parasite. Restrictive eating disorders are thought to have persisted within our gene pool because it had survival advantage [P Slade, 2011; S Guisinger; 2003].
One of the unfortunate aspects of activating an eating disorder (ED) is that restriction of energy intake has changed some functions in your body in ways that do not occur for non-ED people. So I’ll first explain a bit about the shifts that happen when ED-genetic mutations are activated with starvation.
When a non-ED and ED person both starve/diet their leptin levels plummet in their systems. Leptin is a gating hormone that manages metabolism, appetite, bone and blood formation, and reproductive hormone function. When we are at a healthy weight and taking in adequate energy, our leptin levels are at an optimal level. When they plummet, two things happen: the metabolism is suppressed and appetite increases. By the way, these are normal survival reactions and they are not resolved by trying to circumvent them while still trying to restrict intake.
For the ED person, starvation activates genes that shift the normal function of neurotransmitters in the brain. It is these neurotransmitters that are implicated in generating the anxious and compulsive thoughts, feelings and behaviors surrounding food and sometimes also body image and weight gain [WH Kaye et. al., 2005; F Fumeron et. al., 2001].
A non-ED person will say she feels irritated, fatigued, hungry and moody when dieting. The low leptin levels are creating unpleasant moods and extreme hunger to signal to the brain that it is time to go find more food/energy to eat.
An ED person will say she is not hungry. Although experts dispute whether she actually does feel hunger or not, it is clear she feels calmer, energized and dissociated from negative feelings (emotionally blunted) as a result of suppressing her hunger [S. Guisinger, 2003; M. Duclos et al., 2012]. The ED-skewed neurotransmitters are perhaps able to override what the leptin levels should be triggering: unpleasant moods and the desire to eat more.
One third of all people who diet end up on the restrictive eating disorder spectrum. [J Jones et. al., 2001; CM Shisslak, M Crago, 1995]. While not all of them develop clinical cases, they all experience lifelong anxieties and compulsions around food (if left untreated).
A sub-clinical case can worsen, at any point, due to life stressors (anything from a cold to a break-up). Patients can express multiple facets of the same spectrum at once or shift from one facet to another over time (anorexia, restrict/reactive eating cycles, bulimia, orthorexia (extreme focus on healthy foods) and anorexia athletica (over-exercise)).
Most people don’t know or are unaware that treatments for restrictive eating disorders are largely not evidence-based.
Evidence-based treatment means that there have been clinical trials where the treatment in question is measured against a control group and other researchers have duplicated the results. Ideally, the treatment has also been measured over a long period of time to ensure the outcomes are not short-lived as well.
There is only one treatment protocol out there that fits that definition today: Maudsley Family-Based Treatment. It has controlled and duplicated trials as well as published and confirmed 5-year remission rates.
Two other protocols, Kartini (a family-based approach) and Mandometer (a technology-based approach), have self-published data but no independent corroboration of their findings as yet.
Problematically, Maudsley is specifically designed for child and adolescent sufferers of restrictive eating disorders. And its design is usually difficult to translate into the adult sufferer’s environment.
The MinnieMaud is the set of guidelines for recovery that are published on the Your Eatopia site. There have been no controlled trials or independent corroboration and therefore MinnieMaud cannot be identified as evidence-based treatment at this point. However, the guidelines are based on clinical trial data from Maudsley and the Minnesota Starvation Experiment, among other trial results, rather than merely empirical observation or practitioner philosophy.
The MinnieMaud guidelines include the following key facets:
- Unrestricted eating with minimum intakes that are set to reflect actual average consumption of non-restricting equivalents. [I Need How Many Calories?!! references embedded in that post]
- No workouts or exercise. [C Zunker et. al., 2011; S Bratland-Sanda et. al., 2010]
- No weighing or taking measurements of self*.
*Numerous inpatient environments resort to “blind weigh-ins” so that they can monitor the patient’s progress while ensuring the patient isn’t triggered to relapse by knowing his or her weight (standing on the scale backwards). But the larger issue of why we must know our weight is overlooked in this approach. Weighing oneself is counterproductive to accepting that optimal weight set points are maintained without cognitive interference.
The Telltale Dozen
How do you identify a restrictive eating disorder? Because it is a neurobiological condition, it is the mindset you are forced to adopt towards food that is most telling. Please note that your current weight or body mass index is meaningless in the identification of the presence of a restrictive eating disorder.
- Family and friends have shifted from congratulating you on your weight loss and/or your healthier choices to making either careful or even blunt comments that you look too thin, sick, or generally don’t seem to eat enough.
- You are cold when others are not. You’ve started wearing sweaters when others are in short-sleeves. Sometimes you feel light-headed, dizzy. Other times you feel foggy-headed – like you are listening to others through cotton wool.
- You are tired and find your mind wanders. You struggle to focus in class or at work. You cannot remember things that others remember easily.
- You are prone to crying spells and/or explosive bouts of anger (more so than what might be usual). You alternate between wanting to be alone, snapping at family and then finding you are clingy and needy, seeking reassurance from loved ones.
- Not only do you find it hard to concentrate, but also you find you are absolutely consumed with thoughts of food. When you will eat. What you will eat. What you won’t eat.
- Facing social circumstances that involve food creates panic: family celebrations, lunches with friends at school, holiday times…in the days leading up to such events you feel extremely anxious and spend a lot of time trying to figure out how to avoid it altogether.
- The number of rules you assign to when and how you will eat keeps getting longer. You have become ritualistic to the point where any deviance causes massive anxiety (the wrong plate, the fork in the wrong place…).
- You have longer and longer lists of forbidden foods that you will not touch.
- If you indulge in any food that you consider unacceptable, you are wracked with shame, self-hatred, loathing and usually ‘punish’ yourself for the transgression (exercising to exhaustion, skipping yet another meal)
- As a woman, your regular menstrual cycle is irregular or has disappeared completely. Whether you are a woman or man you notice your skin appears dull and dry. Your hair and nails are brittle and perhaps your hair loss seems more pronounced than usual (clumps in the bathtub trains or on your brush).
- You find yourself promising yourself and others more and more that “tomorrow” will be different. But it isn’t.
- You lie to loved ones about what you ate that day, or about how much you actually exercised and make excuses for why you cannot eat now. If they are friends, you often fabricate food allergies, intolerances or other reasons why you cannot have the particular item being offered.
If the Telltale Dozen seem to ring true, then your next step is to determine whether these behaviors are impinging on your quality of life. If you feel you are missing out and are suffering, then it is time to seriously consider a recovery effort.
Gwyneth Olwyn is the owner of Your Eatopia, a website cataloguing Olwyn’s four year investigation into the science-based information on restrained eating disorders and recovery from them. She is a patient advocate and a member of The Alliance of Professional Health Advocates. Read her posts at 180D HERE.