Published in Optimum Nutrition Summer 2015

There is little information available on selective eating disorder (SED), so anyone who has difficulty increasing their acceptance of foods may feel isolated. Indications, however, are that it is far from rare — a survey into the condition by Duke University in the US received 6,000 respondents.[1]

SED is “a little-studied group of eating disorders which severely inhibit or prevent the consumption of a range of foods.”[2] While eating disorders are usually associated with conditions such as anorexia or bulimia, which are related to body image problems, SED isn’t about weight or fear of weight; instead, it is when someone eats a restricted diet — often to the point where new foods will cause anxiety and fear.

In the US in 2013, SED was renamed Avoidant/Restrictive Food Intake Disorder (ARFID) and added to the fifth edition of the Diagnostic and Statistical manual of Mental Disorders (DSM).3 It’s described as a condition that occurs in early childhood, with children opting to eat a narrow range of foods. “Some of the signs of selective eating include accepting 15 foods or fewer, omitting whole food groups, persistent gagging, tantrums at mealtimes.”[3] 

Children with SED are often dismissed as being fussy or difficult, yet there may be various reasons why they don’t want to eat. Not everybody experiences food in the same way. On a simple biological level our sense of smell and taste dramatically affect how we enjoy food; somebody who has a dulled sense of smell, for example, may experience a depressed appetite — something many of us experience just from when we have a cold! The number of taste buds we have will also impact on how we experience food; each one of us could be a non-taster, average taster or a super-taster. Unfortunately, however, being a super-taster doesn’t give you special powers, but it will make you more sensitive to taste; particularly bitter flavours such as those in Brussels sprouts. Super-tasters may also avoid foods that are very sweet or salty.

In extreme cases, people with SED may go on to develop food phobias as a result of anxiety or stress around foods that, for example, they’ve been forced to eat.

Two biological responses may also be related to SED. Sitophobia is the term for when people experience a fear of certain food textures or odours, with even the thought of the feared food bringing about nausea or anxiety. Phagophobia is the term for when a person has a fear of choking and so develops a fear of swallowing.

However, for many people who have SED there is a chicken and egg problem, did a dislike of food cause the fear, or did the fear cause the dislike? It’s a problem that is a tough nut to crack, and one that could be made even harder while people suffer in silence.

Selective Eater: Mark

Fifteen-year-old Mark is a polite, gentlemanly youth who engages in conversation, and who likes to make people laugh. He has mild Attention Deficit Disorder (ADD) and is also a selective eater.

Smell is the first thing to turn him off food. His mother, Karen, explains, “Some smells are so strong to him that he will leave the room. When it comes to food, if he hates the smell he will not try it.”

To the casual observer, Mark might appear ‘fussy’, but smells can be overwhelming. “Apparently it is common for children on the [ADD] spectrum to be highly-sensitive to smell and visual cues,” she says. “Lots of them do not like their food mixed or to touch.” He is also sensitive to taste and texture. “If food is too chewy he will not eat it. He likes foods to be smooth and bland — he loves smoothies.”
Conversely, Mark does like some sharp tastes, and will eat salt and vinegar crisps. “He loves the smell of vinegar — which is weird because it has a strong smell,” says Karen. He also loves lemon ice sorbet and full-flavoured, green apples.

Because he doesn’t like foods to touch, something like pizza is off-limits. “Pizza — the smell, the mixture of things all together make him sick.

“Rice and veggies can be put on the same plate but not touching each other. If ketchup [something he loves] touches the vegetables he will not eat it.”

However, compared with some selective eaters, Mark does eat quite a range of foods. He loves cooked vegetables, any meat and lots of fruit. At times it has been difficult; disliking pizza, for example, is potentially a social barrier. “It can be hard if you go to a child’s birthday party,” says Karen. “Many times when he was little I would feed him before going to a party and then tell the host he will not eat the pizza.

“Eating at somebody’s house or a restaurant where everything is mixed together can be a real challenge.” In restaurants now, they ask for vegetables on separate plates and any sauces to be separate.

Mark’s revulsion at foods being mixed together began when he was tiny. “When he was little he would eat everything boiled, but if it was mashed he would spit it out. The doctor said to try boiled veggies, raw veggies and cut little pieces of fruit, but as soon as I mixed the food he would spit it out or make himself sick.

“First I was worried that he would not thrive,” says Karen. To bulk out his diet she would give him extra portions of foods that he did like. “I would include butter, full fat milk, Greek yogurt to balance the fact that he did not like cheese, for instance. He did not like salads or soups so I would give him a bigger portion of cooked or uncooked carrots, green beans or cooked ‘little trees’ — what he used to call broccoli!”

When Mark started preschool Karen, who was working as a classroom assistant, saw many other children also ate a selective diet, so she realised her family was not alone. “I started to relax a bit and just introduced new foods from time to time in small portions to see his reaction. I never forced him — I used to say ‘one bite, please try it and see if you like it — no pressure’. I never forced my children to eat. My mother did this to me and it used to make me nauseous.” And it’s something she continues to do. “I still try to add a piece of veg or fruit that he has not tried before to his packed lunch or on his plate. Sometimes it is hard to make him try, but he will — but will swallow it fast and drink two glasses of water!”

Because Mark eats a range of foods, he does not feel he is missing anything. Blood tests have shown he has no deficiencies, and his weight is in the healthy range. Food isn’t something that bothers him unless he is hungry; he generally doesn’t snack and doesn’t eat for comfort.

For a while the family lived in Southeast Asia, where Mark developed a taste for rice, which is bland enough to suit his palate. Because of his sensitivity towards smell and taste he can easily tell the difference between varieties and qualities; one variety of rice he absolutely loved turned out to be the most expensive type that was only used during a traditional holiday! The Asian way of serving food suited him too. “He was much at ease in Asia because very often foods are served in different bowls,” says Karen.

But any trips away were a challenge. On such occasions Karen would pack preferred foods like apples and bread for emergencies. “When we lived in Asia I was concerned when he had a five-day school trip, so asked the nurse to keep an eye on him. I told them to give him plain rice and mangos and that he would survive — he did! But he was really hungry when he came back!”

Mark is getting more adventurous, says Karen. “But it is on his own terms. He knows he could explore different types of food, but told me literally that if he was starving for a few days he would try — and maybe pinch his nose first!

“He thinks that he has a balanced diet because he does not eat ready meals, processed foods, sugary stuff or fast food often. He is healthy. He had a blood test recently and has no lack of vitamins.”

Mark’s cautious willingness to try new foods is perhaps testimony to the way Karen has introduced him to food over the years, so that his selective eating hasn’t resulted in anxiety and fear around food. Because the family moved with his father’s work, Mark has also had to adapt to what was available in different countries.

Socially, he doesn’t feel he was treated differently because of his eating habits. “He was always honest with his friends,” says Karen, “and told them straight up what he liked and what he does not.” When he was in the second grade at school in the US, the teacher asked what type of foods the children didn’t like. When Mark said pizza the whole class teased him about it. “He replied ‘I do not eat mixed-up sloppy food! It is unhealthy for me to eat!’” says Karen. She adds that Mark would often use humour when people questioned his diet.

As for whether he would have eaten if he’d been left hungry, Mark cannot speak for his younger self. A few years ago, he says, he would “eat a ton of apples, bananas, loads of bread, cheese strings” if he was out with friends or his father on short trips. Now he is older, if he is hungry enough he will try new foods — although, he says, definitely not salad!

Selective Eater: Wanda

Wanda is a sociable, cheerful, 30-year-old. She is also a selective eater who disguises her food fears behind lies.

In a five-a-day (ideal) world, Wanda’s diet is poor; other than orange juice (without bits) or tomato soup, she eats no fruit or veg, hiding behind a jokey love of cake. Observers might think she’s simply out and proud about liking unhealthy food, but it’s not that simple. Cake is fun; female comedians have established entire careers by joking about cake, and in Wanda’s case it’s something she can laugh about while hiding her food anxiety.

Wanda hasn’t been diagnosed with anything that might explain her diet, but she has habits similar to those of a child she knows who has Asperger’s, such as not wanting food to touch. “He won’t try pizza because he’s scared of all the things mixed together,” she says. “For me pizza is wonderful, but put anything on it then no chance. It has to be the plainest margherita. If it’s got bits of tomato, if I’m on a less confident day I won’t touch it. On a more confident day, I’ll be able to pick the bits off — I won’t eat them, but I’ll pick them off, which is an incredibly slow process.”

Foods she can eat are “safe”, but unknown foods cause anxiety. “A piece of tomato and tomato sauce aren’t even the same category,” she says. “Tomato is scary, tomato is unimaginable, but tomato sauce is different.” (She doesn’t remember ever eating a tomato.)
“Safe,” she explains, “it’s not poison or something like that. When you hear stories of people who’ve found a massive piece of gristle in a burger — that is kind of what it’s like for me. You’ve no idea what you might find. Something like a bone is terrifying. What’s a bone doing in the dinner? It doesn’t make sense. Every rational part of me knows it came from a chicken or any other animal — I’m not one of those people that doesn’t understand pork comes from pig. It’s not knowing whether there is a piece of the unknown in there.
“One of the ways I used to explain it, which is maybe not the right way, was that if I was cooking a dinner for you and instead of spaghetti and meatballs put earthworms and eyeballs in front of you.

“The odd thing is that food can smell lovely, but then I look at it and can’t eat it. I can appreciate the smell but there’s no way I’m going to put it in my mouth.”

She’s been told that until the age of two or three, she would eat everything. “Then I started saying no.” Because the family was on a low income her mother would make meals from scratch. “I’d get what I was given, we couldn’t afford for me to be fussy.” Doctors advised her mother to “just get” Wanda to eat — Wanda was, after all, the child in the relationship. But it didn’t work and her mother gave in. “When a mother is sitting with a child that says no, she has two options — try to force this child to eat something they are quite determinedly not going to eat, or give them something else that they will say yes to.” Her mother also tried blending foods. “I wasn’t the stupidest kid in the world. I twigged what was going on — it’s not as if your kid’s not going to notice when the blender’s going off.”

She would love to know why food became scary. “Apparently I used to eat hard boiled eggs and then one day [mum] walked in to find me eating the shell. She just said ‘Don’t you know you’re not supposed to eat the shells?’, and I threw a tantrum. From that point I refused to eat eggs.” She will eat cake, which has eggs, and would eat French toast, but otherwise eggs are off limits. It’s something she puzzles over; especially because her sister will happily eat anything.

So now Wanda is stuck with what she describes as, “The ideal diet of a six-year-old.” She’ll eat fish fingers, fish in batter or chicken nuggets. “But if you showed me a fish that’s naked, not a chance!”

Yet she has added foods to her list. “The last five years I’ve been able to eat ribs,” she says. “A boyfriend would order it, I was curious...and there was so much trust. I broke a piece off that didn’t touch anything else — it was very soft and it was the barbeque sauce that I could taste above anything else.” Ribs are now one of her safe foods, but this leap didn’t happen in one day. “There was a lot of time seeing him eat it, and there were enough times of me trying it from his plate when I had my own dinner — so if I didn’t like it, it didn’t matter. I had what was safe for me.”

Cost and waste do hold her back. “You don’t want to order something and not know if you can eat it. There’s also the fear that if you order something you’re expected to eat it. It’s not an option to go into a restaurant, order something and leave 99 per cent on your plate, because they’re going to wonder what’s wrong with you.”

It frustrates her. “I really want to fix it, but you have to have the perfect scenario, be in the right frame of mind. You have to be completely confident about everything, and you have to be completely confident in the person you’re with.”

The answer, it might seem, would be to try new foods at home, but that’s not easy either. “I don’t know if it’s because I remember standing in our kitchen trying to eat apple...carrot... banana, throwing up in the bin.” Also, any ‘planning’ element creates anxiety.

“It can’t be pre-planned, because you start panicking. You have to be able to go, ‘What’s that? Can I try that?’ It almost has to be as if nothing happened. But it’s impossible to know what you might fancy trying because most of it’s quite frightening ‘cause I don’t eat any fruits and veg.”

What little fibre Wanda gets comes from white bread, pizza base or potatoes. She will eat semi-wholemeal bread, but not if she’s feeling less confident or having a bad week. “White bread is just safe,” she says.

But she doesn’t think her diet affects her body. “For me it seems quite normal — it doesn’t give me issues.”

What about bowel movements?

“I haven’t written a diary about it,” she confides quietly, “but probably once a week, a week and a half — two weeks.”
While it’s often said we should have at least one bowel movement a day, there is an argument that as long as bowel movements do not have any accompanying discomfort then there is nothing to worry about. But fibre is considered important in preventing illness such as bowel cancer.

When she was a child, doctors didn’t worry about Wanda’s selective eating because she was a healthy weight. Now, although she has gained weight, recent tests raised no concerns — to Wanda’s surprise. She does get migranes, though, and wonders if they could be diet-related.

Socially, however, her diet has affected her “vastly”. Recently, when out with a group of acquaintances, she was left on her own while the others went to eat together.

“The plan had been to go to TGI Fridays or an American-style diner, in which I knew I could find something to eat,” she says. But instead, the others chose Mexican food. After scouring the menu, she explained her problem and asked if the others might consider another restaurant; but she was told to eat elsewhere and join them later for drinks. After eating alone, she returned to find the others had gone. Later, when she asked what had happened, she was told — specifically in relation to restaurant choice — that she had been behaving like a “diva”.

From previous experience, Wanda believes that had she lied and said she’d eaten Mexican food the day before and didn’t want it again, the others would have been more understanding. “People are more accepting of you saying ‘I had pizza yesterday I don’t want it today’. If you just say you don’t fancy something, a lot of the time people say ‘Ok well, how about this?’.”

Ironically, the sheer variety of food available is a problem for Wanda; because of a social expectation to like — or at least try — everything. “If you say you don’t like spicy food people kind of say you’re silly.

“If you say, for instance, you don’t like Indian food people are like, ‘How is that possible?’ But if you say it doesn’t make sense, it’s slimy and there’s bits, and it has rice and rice doesn’t make sense they’ll look at you like you’ve fallen from Mars.”

Wanda knows her food issues can be tiresome for others. “Even with people who are your friends no matter what, you still get a bit of a” [she sighs heavily].

That’s why it’s easier to lie. “I used to say I wasn’t hungry. You could be starving enough that you’d eat someone’s left arm if it was socially acceptable! But you say you’re not hungry. It’s also the most socially polite way of doing things, but sometimes you’ll die a little bit inside — because everybody else won’t realise what’s going on until it’s too late.

“But as I got older I started thinking I’m not worth less than everybody else. I don’t want to go into a restaurant and have a bowl of chips while everyone else is having a full-blown dinner and pudding.”

When Wanda was little, her mother was told that she would grow out of it. “But people don’t grow out of it,” she says. “They just get clever at hiding it.”

At school she would pretend to eat by making a mess. “I was good at pretending I had eaten, either burying food in other food, chucking it on the floor...never give it to another child because that involves telling someone else.” She recalls a time when a dinner lady decided to sit with her until she had cleared her plate. “I was literally sitting there the whole lunch time staring at this food that I could not eat.”

Wanda admits that if she had to eat new foods or go hungry, she’d go without; but only because she knows she can. “I’ll wait until something turns up that’s on my yes list.” And because it’s socially acceptable to snack on fizzy drinks or or chocolate, she can always find something — even though she knows it’s not good nutrition. A sneaky peek into her handbag reveals a variety of sugary goodies for such emergencies.

But because her choices are so limiting, she wants to change. She’d like to visit Japan, but can’t envisage it right now.

The irony is that Wanda loves food. “It sounds bizarre but I very much like food.” Would she like to try a little of my chicken and avocado salad? She looks at it, her face a mixture of desire and nerves. “Not this time,” she says, eventually.

She has tried smoked salmon, which wasn’t a hit, and recently on holiday decided to play “pudding roulette”. She laughs, “I hadn’t got a clue what anything was, there was nobody around, and it was only my best friend sitting with me so what difference did it make.” Critics might suggest she played roulette with puddings, but probably wouldn’t with vegetables. But for Wanda it still took nerves. “Having a sweet thing is equally scary because you don’t know what’s in it.”

Because she wants help she’s determined to speak to her doctor — again. “It’s very difficult to be a grown-up but have the diet of a child.” Yet she wonders if she’ll be taken seriously. “But what’s the difference between being scared of, say, a spider that’s in front of you,” she says, “and being afraid of taking something unknown — and putting it in your mouth?”

Selective Eater: Adriana

Adriana is a 53-year-old professional who admits to being entirely comfortable with her food choices.

On her list of acceptable foods, Adriana includes: bread, cheese, butter, nuts (peanuts, Brazil nuts, hazel nuts, pistachio nuts) dried fruit (“As long as it is in small pieces e.g. chopped dried apricot but not whole dried apricots.”), raisins, sultanas, cranberries, cherries, blueberries etc), most types of crackers, flatbreads, rice cakes and similar, crisps, chocolate, sweets. “Occasionally apples and grapes when I’m trying to be good. I drink teas of all kind, ginger beer — occasionally — and wine, whiskey, gin, cider.”

Adriana has no memory of how her selective eating started, but a bout of illness may have contributed. “My mum told me I had measles when I was two and went off food and refused to eat after that. Although I did eat chips and sausages for a while — I remember that — but I’m not sure why I stopped.”

Attempts by her mother to get her to eat failed dramatically. “Mother tried to make me eat things and used to push me. I resisted — I was very stubborn — still am sometimes.” Efforts to get medical advice also failed. “She used to drag me to the doctors in an attempt to get the doctor to tell me off, but they never did.” Doctors always said Adriana was perfectly healthy and would probably grow out of it. “One teacher tried to make an issue of it when I was in sixth form — I think she thought I had anorexia or something similar; but mum told her where to go! I don’t remember my dad ever saying anything about it.”

Although her mother did want her to eat more foods, Adriana believes that in the end her mother just gave up trying. “I think it was a battle of wills with my mum — the more she pushed me, the more I resisted.”

Adriana doesn’t equate facing foods with fear; possibly because she does not feel under pressure to eat anything that she doesn’t want to, and these days she doesn’t have to face new foods. “I added nuts to my diet when I was a teenager and seeds about 10 years ago and haven’t added anything since. I don’t choose to eat new things and if anyone tries to push me I just say no — very firmly.” She also eats a wider range of dried fruit than she used to. “I don’t think my mum ever thought of buying dried cranberries when I was little.”

Food texture is the issue for her. “I don’t like messy food. My food is mostly quite dry. I only eat hard cheese, not soft Brie-type cheeses — although I do like Stilton, and that’s quite soft. Butter is ok; I’m not sure why that is better than soft cheeses — it just is.”
Adriana wouldn’t seek help to increase her food acceptance because she’s happy as she is. “I eat the food I like and I don’t get bored with it or wish to be different. And I save a lot of time on cooking and washing up because I don’t cook or eat messy food.”
Because she has always been “pretty healthy”, she does not think that her diet has impacted her health. “But I am over fond of chocolate and crisps and much of what I eat has a high fat content. I don’t like being overweight — I’ve become overweight in the last 15 years.”

Because Adriana is happy in her own company, she doesn’t feel that her food choices have affected her socially. She’s not uncomfortable discussing her diet, although she says she used to be much shyer about it. She knows that people might be surprised at her eating habits, but that doesn’t bother her. “[People] start asking me ‘do you eat x, y, z?’ and ‘what do you eat for Christmas dinner?’”
Christmas dinner, she says, is “cheese on crackers, Christmas cake, nuts and chocolate.

“I expect [people] think I’m a bit strange. I don’t think it’s as bad as it used to be, as so many people have various dietary fads or food intolerances these days that weren’t discussed in the 1960s and 1970s when I was growing up.”

As for it affecting her socially, Adriana sees her selective eating as something of a bonus. “Yes — I have the perfect excuse to avoid office Christmas parties in restaurants, which is a blessing. Most of my friends just accept me as I am.”

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