Low Appetite? Understanding Lack-of-interest ARFID and How to Get Help

While it may be hard for many of us to believe, some people find little pleasure in eating. And this disinterest isn't only for less “fun” foods, like spinach or plain chicken breasts—these people feel the same way about cake, French fries, mac and cheese, and any other delicious or exciting food you can think of. For them, the vast majority of foods simply aren’t appealing. This is often an indication of an eating disorder called lack-of-interest avoidant/restrictive food intake disorder (ARFID). Someone affected by lack-of-interest ARFID doesn’t often feel hungry, and when they do, a few bites of food is all it takes to make them feel satisfied.

Since they often eat a limited number of foods and small amounts of food, people with lack-of-interest ARFID tend to be underweight and experience nutritional deficiencies, which can increase the risk of health problems. Luckily, there are effective and evidence-based treatments for this type of eating disorder, which can help anyone struggling turn up their hunger cues, comfortably eat more, and recover. If you’re concerned that you or a loved one may be dealing with lack-of-interest ARFID, read on.

What is ARFID?

ARFID is a somewhat newly recognized eating disorder. It was introduced into the Diagnostic and Statistical Manual of Mental Disorders, fifth edition (DSM-V) in 2013. It’s used to describe an eating disorder where people limit how much they eat, the variety of foods they eat, or both— but unlike other eating disorders, ARFID feeding behaviors aren't driven by a desire to lose weight or control how one's body looks.

There are three presentations of ARFID. People may have one or more of these:

Selective eating due to sensory sensitivity

Some people find certain food textures, colors, smells, and tastes highly repulsive or, on the other hand, have a strong preference for foods with particular characteristics. Because of this, people with this ARFID presentation eat only a very limited number of “safe” foods, which often includes specific pre-packaged foods, since those foods are predictable.

Fear of aversive consequences

Concerns about choking, vomiting, allergic reaction, illness, or pain keep people with this presentation of ARFID from eating. This commonly occurs after one or more traumatic eating events, such as choking or getting food poisoning. It can also be common in people with valid food allergies or a history of gastrointestinal disorders.

Lack of interest and low appetite

In this instance, people have little desire to eat and often find little pleasure in eating. Their hunger cues tend to be muted, and when they do eat, they feel full after a small amount of food.

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Understanding lack-of-interest ARFID

Also called low appetite or low hunger ARFID, lack-of-interest ARFID is when someone has a very low innate drive to eat, explains Equip’s VP of Clinical Programs, Jessie Menzel, PhD. “They don't enjoy food that much or derive little pleasure from food or eating,” she says. Because of this, children with lack-of-interest ARFID may have “failure to thrive,” meaning they're well below the weight and height of other children their age and sex. Similarly, some but not all adults with lack-of-interest ARFID may have low weights.

Symptoms of lack-of-interest ARFID

Lack-of-interest ARFID can be tricky to identify. Knowing the common symptoms can help you spot this disorder in yourself, your child, or another loved one. People with this eating disorder:

Restrict their food intake
Go long periods of time without eating (because they're not hungry)
Feel full quickly after eating small amounts of food
May take small bites
Eat smaller meals
Often take a long time to finish a meal
Don't enjoy food that much
Have a hard time tolerating fullness
Experience stomach pain or discomfort if they eat larger meals
Feel like they have to push themselves to eat
Are lower in weight
May have some sensory sensitivities to foods

What causes lack-of-interest ARFID?

Although research about ARFID is still in its infancy, from what has been studied, lack-of-interest ARFID is associated with hormonal abnormalities, Menzel says. Young women with lack-of-interest ARFID have lower levels of ghrelin. Often called the “hunger hormone,” ghrelin increases appetite, which triggers us to seek out food and eat.

“In people who have anorexia nervosa, levels of ghrelin increase substantially. It's like the body turning up the volume to tell a person to eat because they're starving,” Menzel explains. “But in people of similar weight who have ARFID, the body isn't turning up levels of ghrelin. It's not trying to compensate for low weight by driving the urge to eat.”

Genetics may also play a role in the development of lack-of-interest ARFID, with one twin study showing that inherited factors contributed approximately 79% to the diagnosis, and unshared environmental factors accounted for 21%.

Lastly, although not necessarily a cause, lack-of-interest ARFID is associated with autism, anxiety, and depression. “Early challenges with eating are associated with later developing other psychiatric disorders, but it's unclear which causes which,” Menzel says.

The risks of lack-of-interest ARFID

Any presentation of ARFID can affect someone's physical and mental health, as well as their quality of life. Here's how lack-of-interest ARFID can impact a child or adult.

Physical health risks

Mental health risks

Anxiety
Depression

Quality of life risks

People with ARFID may lack social connection, which can contribute to the development of anxiety and depression. “Eating is so central to the way people relate to their worlds. It's social: we eat at family gatherings, school, and other times,” Menzel says. “If you don't enjoy food or struggle with it, that can be isolating. You may avoid those gatherings because you can't relate or you worry about putting your food challenges on display. That prevents the opportunity for social connection, which is huge for resiliency.”

How is lack-of-interest ARFID treated?

Treatment for lack-of-interest ARFID starts by trying to establish regular eating, Menzel says. “In this instance, we focus a little more on increasing the volume of what they can eat as quickly as they can tolerate.” The most common types of therapy to help with this are variations of cognitive behavioral therapy (CBT) and family-based treatment (FBT).

Cognitive behavioral therapy for ARFID (CBT-AR)

Many clinics and professionals use CBT-AR, a type of cognitive behavioral therapy specifically for ARFID and appropriate for people ages 10 and up. In this protocol, the patient progresses through four stages over the course of about 20 to 30 sessions.

In the first two stages, the patient eats three meals and two to three snacks a day at set times. “This normalizes eating, which helps prompt the body to start giving some hunger cues,” explains Evelyna Kambanis, PhD, clinical research fellow at the Massachusetts General Hospital Eating Disorders Clinical and Research Program.

As part of this, the provider may ask the patient to self-monitor their eating, providing food logs of what they consume on a daily basis. Additionally, the patient rates their hunger and fullness on a scale of one to seven before and after every meal and snack. “This helps bring greater awareness of hunger cues, because they've learned to ignore those cues,” Kambanis says.

The third stage, which has different modules for each presentation of ARFID, is the “heart of treatment,” Kambanis says. For lack-of-interest ARFID, this stage uses interoceptive exposure: “The exercises we use help patients see that the internal bodily sensations—like bloating, fullness, and nausea—are temporary, tolerable, and not associated with long-term consequences,” Kambanis says. Because of this, over time, the patient can eat more food in terms of both volume and variety.

Though different exposures may be used, some common ones are:

Having the patient push their belly out as far as possible for 30 or more seconds (to simulate bloating)
Gulping two to three large glasses of water in as few sips as possible (to simulate fullness)
Spinning in a chair for 30 seconds (to simulate nausea)

For each exposure, the patient rates their levels of stress, anxiety, and fear before, during, and after the exposure. Providers also may ask the patient how similar the physical sensation they felt during the exposure was to the feelings they have or are trying to avoid when eating. “We coach them to sit with—rather than avoid—that anxiety and uncomfortable feelings and notice any reduction in their feelings during the course of each exposure,” Kambanis explains. Then, whichever exposure feels most distressing, the provider assigns that as homework for the next week.

Lastly, providers work with patients to help them develop a greater awareness of the rewarding aspect of foods, using an exercise called “the five steps.” “You mindfully describe a preferred food using sensory exploration,” Kambanis says. One at a time, the provider asks the patient what the specific food looks, feels, smells, and tastes like and what its texture is like. To emphasize the positive aspects of the food, the provider will also ask things like what the patient likes about their preferred food and what special events it reminds them of. “Then we ask them to incorporate those into their regular meals and snacks in the upcoming week to help them drive more pleasure in eating,” Kambanis explains.

Family-based treatment for ARFID (FBT-ARFID)

Most often used for children, this collaborative therapy gives parents a key role in recovery. It aims to “help parents feel more competent and empowered with the skills they need to manage their kid's eating challenges,” Menzel says. Providers work with parents to identify strategies to increase the volume of meals and help parents manage behaviors that may come up around mealtime. Over time, as the patient progresses, the treatment shifts to help the patient feel more comfortable managing eating on their own to the extent that they're able, Menzel adds.

Preliminary research has found that FBT-ARFID leads to weight gain and reduction of symptoms for the patient, as well as increased self-efficacy for parents.

Medication for lack-of-interest ARFID

ARFID can co-occur with attention deficit hyperactivity disorder (ADHD), and some stimulant medications prescribed for this condition reduce appetite. In these instances, eating disorder professionals may recommend an appetite stimulant to help patients experience hunger cues and eat a higher volume of food, Kambanis says.

Other treatments

In addition to ADHD, people with any type of ARFID may have other diagnoses, such as autism spectrum conditions. If that is the case, healthcare providers may prescribe medication or other treatments to address these co-occurring conditions.

What to do if you’re worried that you or a loved one have lack-of-interest ARFID

If you think you or a loved one may have lack-of-interest ARFID, trust your gut and find help. ARFID is an eating disorder—it's not something that people just “grow out of”—and at any age, it poses health risks and can harm your quality of life. You deserve a full, happy life, so take action. The following tips may help you:

Educate yourself

By reading this article, you're one step ahead. “A lot of pediatricians are learning about ARFID,” Menzel says. “So come armed with knowledge of what it is and the symptoms.” This can help you advocate for your child—or yourself, if you’re concerned about your eating and your doctor isn’t knowledgeable about ARFID.

Seek out professionals specifically trained in ARFID

Since ARFID is a newer eating disorder, some providers still aren't aware of it. Because of this, if you see a medical professional who isn't trained in ARFID, you may be misdiagnosed, which could delay proper treatment.

“Because the main presentation is restriction and patients are likely to be underweight, this presentation of ARFID can be misdiagnosed as anorexia nervosa, even if the patient denies having body concerns or fear of gaining weight,” Menzel says. This can happen because providers may not be well-versed in ARFID, and patients may not be able to articulate reasons for not eating other than, 'I'm not hungry,’ ‘It hurts,’ and ‘I don't like food,’” she adds.

Lean into preferred foods

You or your loved one likely have a short list of foods you enjoy. Work with that. “Treatment always addresses volume before diversity,” Kambanis says. “If ice cream is one of the only things they look forward to, and they need to gain weight, it's okay for them to eat a lot of it.”

Try Equip

If you can't find a doctor or mental health professional in your area who knows about ARFID and can help you navigate it, schedule a call with Equip. Equip is the largest ARFID treatment provider in the United States, and our team includes providers with specific clinical expertise treating ARFID, as well as those with lived experience recovering from ARFID. That means we can provide treatment that works, as well as the wraparound, comprehensive support you need to recover.

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