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ARFID: who to see and what helps

ARFID · Kitchener, Waterloo & Cambridge

ARFID (avoidant/restrictive food intake disorder) is an eating disorder in which a child, teenager or adult eats too little or too narrow a range of foods to meet their needs, for reasons that have nothing to do with weight or body image. No guideline yet makes ARFID-specific treatment recommendations; family-based, behavioural and CBT-based approaches show the most promise, alongside medical and dietitian care. At CARESPACE the first visit is with a dietitian, as support alongside a physician or nurse practitioner, and a specialized eating disorder program is needed when growth, weight or physical health is at risk.

When ARFID is an emergency

Call 911 or go to the nearest emergency department if you, or someone you care for, have been restricting food (eating very little) or bingeing and have any of these:

  • Chest pain, with activity or at rest
  • Any seizure-like activity
  • Any fainting
  • Irregular or rapid heartbeats
  • Swelling in the ankles with shortness of breath, a cough and chest pressure (like an elephant sitting on the chest)
  • Feeling lightheaded for hours
  • Weakness or cramps of the legs, confusion, nausea and vomiting (these appear when sodium or potassium is very low)
  • Any pain that does not resolve

If you have been bingeing and purging, go for any of the signs above, and also for:

  • A large amount of blood in the vomit or stool
  • Vomit that looks like coffee grounds
  • Black stools (unless you are on iron or taking Pepto-Bismol, which can discolour the stool)

These lists are from the eating disorders program at the Canadian Mental Health Association Waterloo Wellington. Nobody at CARESPACE can rule these signs out, and none of them should wait for an appointment.

HealthLink BC’s list for people diagnosed with anorexia adds two signs that need medical care the same day, from a physician, a nurse practitioner, an urgent care clinic or an emergency department: not being able to pass urine, and a slower-than-normal heart rate. Its other signs (a pounding or skipping heartbeat, fainting, severe belly pain, vomiting blood, black sticky stools, severe pain anywhere in the body) are emergencies, as above.

A child who is drinking very little can become dehydrated. SickKids says to take a dehydrated child to the nearest emergency department if the child:

  • does not make urine for more than 12 hours (6 hours for a baby)
  • is very sleepy or very irritable
  • refuses to take oral rehydration solution or a preferred drink, even with a syringe
  • does not appear to be recovering, or is becoming more dehydrated
  • has blood in the diarrhea or vomit, or vomit that turns green
  • has pain that you cannot manage easily, or that is making them unable to take in enough fluids
  • has persistent vomiting or diarrhea and cannot drink enough to keep up with the losses

Anxiety and depression can be diagnosed alongside ARFID. If you are thinking about suicide, or you do not feel safe, do not wait for an appointment: use the numbers below.

If you are in crisis or thinking about suicide, help is available right now.

  • Call or text 9-8-8, the Suicide Crisis Helpline, at any hour.
  • Call Here 24/7 at 1-844-437-3247 for addictions, mental health and crisis services in Waterloo Region, at any hour. here247.ca
  • Call 911 or go to the nearest emergency department if you or someone else is in immediate danger.

The emergency departments in Waterloo Region are:

  • WRHN @ Midtown (formerly Grand River Hospital), 835 King St. W., Kitchener
  • WRHN @ Queen’s Blvd. (formerly St. Mary’s General Hospital), 911 Queen’s Blvd., Kitchener
  • Cambridge Memorial Hospital, 700 Coronation Blvd., Cambridge

If you cannot get there safely, call 911.

What ARFID is

The Canadian Paediatric Society describes ARFID as a persistent disturbance in feeding or eating that leaves a person unable to meet their nutritional or energy needs. Researchers describe three drivers, which can occur alone or together:

  • Sensory. Avoiding foods because of their texture, taste, smell, colour or temperature.
  • Fear. Worry about what eating might lead to, such as choking or vomiting.
  • Low interest. Little appetite for, or interest in, food and eating.

It usually begins in childhood but can occur at any age. A significant share of people with ARFID also have a neurodevelopmental diagnosis such as autism or ADHD, and it may be diagnosed alongside depression, anxiety and obsessive-compulsive disorder.

Signs and symptoms of ARFID

  • Suddenly refusing foods that used to be eaten
  • Refusing certain foods out of fear of choking or vomiting
  • Losing appetite for no known reason
  • Eating very slowly, or being unable to finish meals
  • Difficulty eating with family or friends
  • Lack of interest in eating or food
  • Anxiety
  • No longer gaining weight, losing weight, or growing slowly or not at all
  • Signs of malnutrition: feeling cold all the time, dizziness, low energy, changes in how the heart works, dehydration, periods that are late or have stopped

Dizziness that lasts for hours, an irregular or rapid heartbeat, fainting and the dehydration signs listed at the top of this page are emergencies, not signs to bring to an appointment.

The social side is easy to miss. School lunch rooms, birthday parties and a tournament weekend on arena food are where a child with ARFID runs out of options.

What causes ARFID

Little is known, according to SickKids, the Toronto children’s hospital. Some children and teenagers with ARFID have an anxiety disorder, often with a fear of vomiting or choking. For others the eating problem is part of another condition such as autism, and ARFID is diagnosed only when the food problems are more severe than that condition would explain. In autistic people, sensory-based avoidance is the pattern that has featured most in the research so far. Stimulant medication for ADHD can make restricted eating worse; raise that with the prescriber, and do not change a dose on your own.

ARFID, picky eating and anorexia: how to tell them apart

Picky eating usually involves a few foods; the child has a normal appetite, eats enough overall and grows normally, and it tends to pass. With ARFID, appetite is poor overall, growth can fall behind, and the problem lasts and needs medical and psychological care. Anorexia also involves eating too little, but there the restriction is tied to fear of gaining weight and to body image, which are absent in ARFID.

How ARFID is diagnosed

Start with a physician or nurse practitioner. The assessment includes a physical examination, weight, height and growth over time, and a search for other explanations: one review names Crohn’s disease, ulcerative colitis and irritable bowel syndrome among the conditions to consider. ARFID is not diagnosed when the eating pattern is explained by a lack of available food, a cultural practice such as fasting, another medical condition or another eating disorder. The same review recommends that the final decision draw on medical, dietetic and psychological findings together.

What the evidence says about treating ARFID

  • There are no ARFID-specific guideline recommendations yet. The UK’s national eating disorder guideline does not cover ARFID. The 2020 Canadian guideline for children and adolescents looked and made no formal recommendation: it found two case reports of family-based treatment, covering seven young people, and thirteen case reports of CBT.
  • The research is early. A 2023 scoping review found 50 studies of psychological treatment, only three of them randomized trials and most describing single cases or small series. The treatments shared common parts: food exposure, education about the condition, anxiety management and family involvement.
  • Three approaches look most promising. A 2023 clinical review concluded that family-based, behavioural and CBT-based approaches “appear to show greatest promise overall”, that none has been shown to be better than the others, and that robust trial data remain absent. The points below are from that review.
  • Nutrition first, then gradual exposure. Nutritional and weight rehabilitation is the priority where it is needed. The dietetic approach is to keep offering preferred foods so intake holds up, while introducing small amounts of other foods step by step, with structured routines.
  • Sensory integration therapy and similar approaches used with autistic children rest mainly on single cases and case series.
  • Medication is not a first step. Several medicines have initial evidence only, and medication is unlikely to become a first-line treatment.

What a doctor may offer

These belong to a physician, nurse practitioner, paediatrician or psychiatrist. They include monitoring of weight, growth, heart rate and blood pressure; blood tests for nutritional deficiencies; medication when anxiety or depression is getting in the way of eating, used alongside psychological therapy; and referral to an outpatient eating disorder program. Hospital care is for children who are medically unstable, which SickKids describes as a slow or irregular heart rate or low blood pressure.

How each CARESPACE service helps with ARFID

Nutrition & Dietitian

Writing about children and young people, the British Dietetic Association says dietitians with specialist training are essential for the management of ARFID, and stresses finding and managing nutritional shortfalls early. A Registered Dietitian can work out what the current diet is missing, plan how to cover the gaps with foods that are already accepted, and guide the step-by-step widening of the diet. Supplements have a place where there is risk; check with a pharmacist, physician or nurse practitioner before starting one. When you book, ask for a dietitian with experience in ARFID or feeding problems; if nobody has it, ask your physician or nurse practitioner about an eating disorder program.

See our nutrition team →

Occupational Therapy

Occupational therapists are among the clinicians whose input may improve diagnosis and treatment planning in ARFID, and Alberta Health Services lists one on its feeding assessment team, which helps a person learn to feed themselves. An Occupational Therapist can assess self-feeding skills. Families often ask about sensory-based therapy; the evidence for it in ARFID is limited to single cases and small series, so treat it as one part of a plan.

See our occupational therapy team →

Speech-Language Pathology

Refusing food can come from difficulty chewing or swallowing, and a child whose main problem is a feeding skill does not have ARFID by definition. A Speech-Language Pathologist can assess feeding and swallowing skills and, in SickKids’ words, build a plan for swallowing safety and feeding skill development, which may include changing the textures offered. That matters most when a child gags, chokes or coughs with food or has trouble chewing.

See our speech-language pathology team →

Counselling & Psychotherapy

Where fear drives the avoidance, for example after a choking or vomiting episode, exposure-based and other adapted CBT approaches appear useful, though the evidence comes mainly from case reports. A version of CBT designed for ARFID has had an early trial, without a comparison group, in people aged 10 and over; its results had not been reported when the 2023 review was written. CARESPACE counsellors offer cognitive behavioural therapy (CBT); ask when you book for a counsellor trained in CBT or exposure work for ARFID, and who sees children if the client is a child. Counselling can also address the anxiety that often accompanies ARFID.

See our counselling team →

Where most people start

With a dietitian at CARESPACE, and with a physician or nurse practitioner for the physical check. If weight is falling, growth has stalled or there are signs of malnutrition, ask the physician or nurse practitioner about an eating disorder program first.

How your team works together

The plan is built around what is driving the avoidance for this person. The dietitian handles nutrition and the food plan; an occupational therapist or speech-language pathologist comes in when sensory or feeding-skill issues are part of the picture; a counsellor when fear or anxiety is. The physician or nurse practitioner monitors physical health throughout. If risk becomes high, referral on to a specialist day program or hospital admission may be needed.

  1. Next available: Nov 21

    Samantha Rocca, BASc, PMDip, RD

    Dietitian

    CARESPACE Waterloo GoodLife

    When food feels confusing, stressful, or harder than it should, Samantha Rocca, BASc, PMDip, RD helps you make sense of it in a way that feels practical, compassionate,…

    Book now About Samantha

Browse by service: nutrition, occupational therapy, speech-language pathology and counselling.

What to expect at your first visit

  1. Ask when you book which practitioners see children, if the visit is for a child.
  2. You may be asked which foods are accepted now, what happens when a new food is offered, when it began, and about growth and health so far.
  3. Bring any growth records or test results you have, and the name of your physician or nurse practitioner.
  4. You leave with a plan.

What you can do at home

  • See a physician or nurse practitioner about any of the signs in the list of signs and symptoms on this page; a teenager who is losing weight should be evaluated. The signs under “When ARFID is an emergency” are for 911 or an emergency department, not an appointment.
  • Keep offering the foods that are accepted, so that intake holds up.
  • Keep meals and snacks to a regular routine.
  • Leave the work of introducing feared or avoided foods to a plan made with a practitioner.

Outlook

Unlike picky eating, ARFID lasts a long time and needs medical attention and psychological care. The reviews we read give no recovery times or relapse rates, and say little is known about the course of ARFID.

ARFID support in Kitchener, Waterloo and Cambridge

Kitchener. Nutrition in Kitchener and Counselling in Kitchener. Locations: Victoria North, Fischer-Hallman, Westmount East and Deer Ridge.

Waterloo. Nutrition in Waterloo and Counselling in Waterloo. Locations: Weber North, Uptown Waterloo and Waterloo GoodLife.

Cambridge. Nutrition in Cambridge and Counselling in Cambridge. Location: Hespeler Road.

The city pages linked above show the locations and practitioners for each service, with their next availability.

Common questions

Is ARFID just extreme picky eating?

No. A picky eater has a normal appetite, eats enough and grows normally. In ARFID, eating falls short of what the body needs, and growth, nutrition or daily life suffers.

Can adults have ARFID?

Yes. It can occur at any age, although most research has been done in children and teenagers.

Is ARFID linked to autism or ADHD?

A significant share of people with ARFID also have a neurodevelopmental diagnosis such as autism or ADHD. An autistic child is diagnosed with ARFID only when the eating problem goes beyond what autism would explain.

Where can I get help for ARFID in Kitchener, Waterloo or Cambridge?

CARESPACE offers dietitian care and counselling in all three cities. Book online or call 519-208-2273 and our Central Reception Team will find the closest location with an opening. Ask your physician or nurse practitioner whether a referral to an eating disorder program is needed as well.

Will my child grow out of ARFID?

That is not what the sources describe. Picky eating usually resolves by itself; ARFID lasts a long time and needs medical and psychological care.

Do I need a referral?

No. Book online or call 519-208-2273. You pay at each visit and receive a receipt for your extended health plan. More on fees and insurance →

Sources

Related conditions

The CARESPACE Central Reception Team

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