Written by the ARFID-GEN research study team
Do you or your child have extreme picky eating?
Researchers at the University of North Carolina Center of Excellence for Eating Disorders are launching the first (and largest) study ever designed to identify genetic and environmental predictors of avoidant/restrictive food intake disorder, or ARFID. We are inviting parents of children and adolescents aged 7 to 17 and adults aged 18 and older who suffer from this extreme feeding and eating disorder to participate. You do not have to have an official diagnosis to be part of the ARFID Genes and Environment (ARFID-GEN) study.
What is ARFID (avoidant/restrictive food intake disorder, selective eating, or extreme picky eating)?
ARFID (also previously known as selective eating or extreme picky eating) has been around for ages but has only recently become an official diagnosis in our library of feeding and eating disorders. ARFID is when a person severely limits the amount or types of food they will eat. Some children and adults with ARFID limit food based on their texture, mouth feel, or even color. Some people with ARFID just seem to be completely disinterested in food. Others may have had a traumatic or frightening experience (like choking or vomiting) that has made them worried or scared of eating certain foods. That means that all ARFID cases are not the same. The causes and the patterns might differ. However, regardless of the cause, ARFID can lead to slowed growth, malnutrition, and altered social and emotional development. Importantly, ARFID can have extreme effects on parents, the family, and relationships.
What isn’t ARFID?
ARFID isn’t just picky eating. Most children go through phases of being picky eaters. We all recognize the facial expression of a baby the first time it tries an unfamiliar food. Typically, children outgrow the picky eating phase and gradually (after several tries) invite new foods into their diet. For many who develop ARFID, instead of inviting more foods into their diet, they become even more selective. That natural developmental path toward varying their diet is interrupted and their food world becomes even more limited.
ARFID is not anorexia nervosa. People with ARFID do not have the same fear of weight gain and body image distortions that are seen in anorexia nervosa. ARFID is not purging disorder. Purging disorder is an eating disorder in which a person purges (vomits, uses laxatives, exercises excessively, fasts) in order to lose weight or change body shape. Although people with ARFID may indeed vomit, the reason for the vomiting is not related to shape and weight.
What are some of the signs and symptoms of ARFID?
Behavioral signs can include:
- Extreme picky eating
- Fears of choking or vomiting
- Lack of interest in food or low appetite
- Limiting food intake to foods with particular textures, colors, or from specific brands
- Complaints of belly pain, nausea, or feeling full around mealtimes
- Avoidance of social situations with food
Physical signs can include:
- Stomach cramps and other gastrointestinal complaints
- Lack of appetite
- Weight loss
- Nutritional deficiencies (malnutrition)
- Low iron, low thyroid levels
- Difficulty concentrating
- Dizziness or fainting
- Slow heart rate
- Feeling cold all the time
- Muscle weakness
What are some misconceptions about ARFID?
- ARFID is just picky eating
- Your child will outgrow ARFID, it’s just a stage
- “If your child’s hungry enough, they’ll eat.”
- “When I was a child, we ate what was on our plate. Parents are just too easy on their kids these days.”
- Grown-ups can’t have ARFID, it’s a child’s problem
- People with ARFID really have anorexia but they just don’t want to admit it
- ARFID can’t be treated
- If you have ARFID you are thin
Parents, children, and adults with ARFID run into these misconceptions from friends, family members, and even healthcare providers. Being met with these misconceptions just makes dealing with ARFID all the harder and does nothing to support families and people with ARFID. Since ARFID is a fairly new disorder, we do not yet have a complete toolbox for treatment, but groups around the world are developing and testing treatments for ARFID. We hope that ARFID-GEN will not only achieve our scientific goals, but also help spread the word about ARFID so that affected families and individuals can get the help and support they deserve.
Can you have ARFID and another eating disorder?
Across one’s life, a person can have more than one eating disorder. Eventually, our goal is to understand how the various eating disorders do and do not overlap on a genetic level. For that reason, ARFID-GEN is studying people who only have ARFID. We have another study ongoing in which people who have another eating disorder (like anorexia nervosa, bulimia nervosa, or binge-eating disorder) plus ARFID are able to participate (see edgi.org).
Why do we think genes might play a role in ARFID?
Before we embarked on a genetic study, we needed to have some evidence that genes actually did play a role in ARFID. So, we turned to a large sample of twins in Sweden to determine whether ARFID is heritable. Briefly, we asked whether identical twins (who are basically genetically identical) are more likely to both have ARFID than fraternal twins (who only share half of their genes, same as non-twin siblings). The answer was, yes. We also did some more sophisticated statistics to see just how heritable ARFID was, and in fact 79% of the liability to developing ARFID is due to genetic factors1. This places ARFID amongst the most heritable of psychiatric disorders and allowed us to convince the National Institute of Mental Health to fund a study of the genetics of ARFID.
How can you help?
The UNC CEED ARFID-GEN team has the enormous task of engaging 6,000 children and adults with ARFID in a study of genetic and environmental risk factors over the next two years. You can help by visiting our website, reading the information, and signing up for the study. You can also help by sharing the word about the study to other families and individuals who might also be struggling with ARFID. We invite you to visit arfidgen.org, email us at firstname.lastname@example.org, or call us at 984-215-6503 to speak with a member of the study team and learn more about ARFID-GEN.
1. Dinkler L, Wronski M, Lichtenstein P, et al. Etiology of the Broad Avoidant Restrictive Food Intake Disorder Phenotype in Swedish Twins Aged 6 to 12 Years. JAMA Psychiatry. Published online February 01, 2023. doi:10.1001/jamapsychiatry.2022.4612