It weighs heavy on my mind, the negative comments from those who don’t live with Selective Eating Disorder (SED). One would think that someone who didn’t know anything about the subject might choose to ask questions instead of offering ridiculous suggestions. Unfortunately, logic escapes many who seem to have an uncontrollable urge to wedge their foot firmly into their mouth. Oh, the irony; reading words from someone with a mouthful of shoe about people who can’t eat but only a handful of foods.
A sample of some comments from The Wright Stuff’s Facebook Page
SED is not picky / fussy eating. Picky eating is a temporary childhood phase. SED usually has an underlying cause. There is always a reason that explains why a child refuses food. Despite what the ‘sole’-seeking, armchair critics might like to think, shipping a child or adult with autism or a digestive disorder to a third world country isn’t going to fix their diet any more than it will change the qualities of the food they cannot eat.
Trying to explain that SED is not just picky eating is hard. Not everyone shares the same medical history. Not everyone eats the same foods. Not everyone answers “yes” to all the points on the chart that follows this paragraph. There is, however, a distinct difference between picky eating as a typical phase of childhood development and someone with SED.
image © Mealtime Hostage, 2012
The shoe chewing crowd could argue that SED is not really an eating disorder, after all, it’s not in the current version of the DSM. I say, “Keep munching away on that sneaker.” I have yet to speak with anyone who has SED that doesn’t struggle with eating socially to some degree. At a restaurant, the garnish (often an offensive pickle) is leaking juice onto their food; a repulsive sauce has contaminated part or all of their meal. Family gatherings are often dreaded for the overwhelming smells, and the food that is expected to be eaten. Adults with SED learn creative ways to bear the relentless teasing, and the remarks about what isn’t on their plate.
Any event that creates a pattern of behavior that significantly impacts social interaction and/or creates distress for the individual experiencing these symptoms meets the criteria for a disorder. Just because it has not been added to current or previous editions of the DSM or any other medical textbook, does not make Selective Eating Disorder any less real. What it does mean, sadly, is that those with this particular eating disorder have a great deal of difficulty finding treatment for it. Parents, like me, depend on advice and suggestions from other parents of kids with SED, and adults who have grown up with it. Many adults with SED never had anyone take their disordered eating seriously. They have just learned to live with it, a strategy that often involves hiding their limited diets from others by avoiding situations that involve eating socially.
For all the quirks that make it so difficult to describe, there is one unifying truth among people with SED. All of them … Every. Last. One… would, if they were able, willingly choose to eat normally.
UPDATE Added July 5, 2013
Selective eating disorder was officially added to the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders in May 2013, and renamed Avoidant/Restrictive Food Intake Disorder.
At the time of the original post, the group of parents and adults that collaborated to create the above chart were aggravated and incensed by the lack of available information on selective eating. Parents, like myself, were fed up with being placated and dismissed with “he’ll grow out of it” while Duke University’s adult picky eating study had heard from over 30,000 respondents. This post continues to attract adults who had no idea there are others who also struggle with eating socially, avoid entire food groups, and often live off a diet that often consists of 30 items or less.
This same post has also attracted knowledgeable feeding professionals who have contributed significantly to the conversation about selective eating.
Speech Language Pathologist, Jennifer Hatfield from Therapy and Learning Services in Indiana describes picky eating as a spectrum, rather than a comparison between extremes.
“A selective eater will NOT “eat when they get hungry.” If you implement a technique designed to “wait them out” or “exert your parental control,” if you alter one of their 10-20 foods, you risk having that food drop out of their food list forever. That. Can’t. Happen. because that would mean lower intake which then would translate into weight loss, nutritional concerns etc..and MORE stress for the child and family.”
Ellyn Satter, Registered Dietitian Nutritionist, Family Therapist and internationally recognized authority on eating and feeding describes eating in general as a spectrum. Developing eating competence is a progression of sequentially satisfying one’s food needs at one level before addressing the needs at the next.
The foundation of Satter’s Hierarchy of Food Needs rest on getting enough food to eat (extreme poverty), followed by having access to acceptable food (unspoiled food, food you are not allergic to). Only after achieving reliable access to food (able to acquire a food stash, and plan for subsequent meals) can people start to consider food selection in terms of taste and appearance.
How does this work with adult picky eating? Consider popular parenting techniques of the 1960s, 70s and 80s and how a parent would be advised, even encouraged to respond to a picky eater. A child who is repeatedly sent to bed hungry for not touching anything on their plate, declining the vegetable, or gagging on the chicken is not learning that there is a constant and reliable access to food. Despite the full pantry, this particular child is growing up with food acceptance skills at the very bottom on the food needs hierarchy. As a result, the need to satisfy hunger is commonly met with energy dense, low nutrient carbohydrates.
Once people learn they can readily access enough, acceptable, reliable, and good-tasting food, only then are they able to comfortably consider novel food and finally, choosing what to eat for instrumental purposes (calories, specialty diets, etc).
It’s common for the adult picky eater to refer to eating as “a chore.” Adult PEs at the lowest levels of food acceptance tend to see food in terms of “edible” and “repulsive”, often wishing all their caloric and nutritional requirements could be met with a supplement to avoid eating all together. With this in mind, adult picky eating is less about being stubborn and hard-to-please and more about living in a food-focused society with under-developed food acceptance skills.
In terms of helping the adult picky eater embrace or expand what they can eat, Satter offers:
“To help yourself, begin by addressing your attitudes about eating. You are entitled to like what you like and to feel good about eating what you eat. Once you learn to be kind to yourself about eating, work on protecting yourself from food pressure. Be matter-of-fact and unapologetic about saying ”yes, please,” and ”no thank you.” Don’t complain and don’t explain.”
What anyone eats is nobody else’s business. If someone else is offended by what is or isn’t on your plate, that is their problem, not yours. It is, and always has been, the eater’s responsibility to choose how much to eat, and that includes the right to say “no thanks” to offerings of anything you don’t want, especially when it’s served with judgement, ridicule, stress, pressure and guilt.
Please continue to add to the conversation.
Mealtime Hostage 
I’m pretty sure I have selective eating disorder. According to my mother, it started after I moved from jarred baby food to table food – she doesn’t remember me refusing any type of baby food. I have a limited list of foods I’m willing to eat, most of the foods I eat need to be plain, and I’m repulsed by a lot of smells and textures – even a food I normally like, I can start gagging involuntarily if the texture is a bit off. I can’t eat most vegetables directly except for white, yellow, or sweet potatoes – I can have tiny pieces of carrot if they are mushy and mixed with noodles and chicken in soup, I can have corn if it’s completely mushed up or baked into something (cream of corn soup, cornbread or muffins, corn flakes – I like the taste but despise the texture of plain corn). The only fruit I like is apples. I will eat chicken, turkey, beef but only prepared certain ways. I can only drink water, milk (plain or chocolate), and one kind of juice. I like a few other things like some kinds of pasta, breads and bread products, a few kinds of sandwiches, breakfast foods, eggs but scrambled only, plain pizza, various kinds of cheese/dairy products. I am expecting my first child and hoping that between vitamins and what I do eat the baby will be healthy. One thing I worry about is how I will introduce foods once my child is older. If my child has the same disorder or even is just going through a picky phase, I will be able to understand, and won’t force a choice between a hated/disgusting food or going hungry – but if my child isn’t predisposed to this disorder, I would like to give him/her the opportunity to try different foods, but aside from buying things I wouldn’t have to cook/prepare like various kinds of fruits/veggies I’m not even sure how to do that! There are so many things I’ve never even tried to cook. Any adults who have this disorder, but whose children don’t, have any advice?
Rebecca:
Congratulations on the impending arrival of your baby! 🙂 I have heard from many adult picky eaters who delivered several healthy babies who grew into adventurous eating children.
Truly, your best chance of setting your child up for a varied diet is to offer food without pressure. I highly recommend you read “Child of Mine” by Ellyn Satter. It will help you understand and prepare for normal childhood eating behaviour. Knowing what to expect will help relieve much of the anxiety you have about feeding your child.
Reblogged this on ShortStackWithButter.
Similarly, I am a 17 year old girl- I full on just CAN’T eat vegetables, most meats or anything with any sort of taste to it.. I pretty much live off of chicken nuggets and plain pasta, sometimes some crisps too. I really don’t like things that aren’t bland, and I am just so unwilling to try them, even the thought of trying them makes me feel ill. Because I don’t get any of the nutrients I need, I also have severe anemia, which my dad blames on my diet, and ultimately blames me for. I just wish other people would realise that I would change my eating habits if I could – its not something I would choose to do!
This article has finally given me at least some explanation, and its helped a lot, so thank you!
Hello, I am 16 and have been researching this I believe I have this, I hate it so much I want to be able to eat food. I don’t eat any meat or vegetables the thought of it the look of it the whole thing just makes me feel physically sick the only fruit I eat are apples and rarely the foods I do eat is plain pasta, crackers plain, pizza without the sauce and just cheese and toast plain and some cereals but I do eat a lot of sweets i used to pretend i was sick just so i would not have to eat my dinner i still do sometimes , my mother and I are very close and I know she always blames her self by what I eat and becomes upset and frustrated over it and I have always felt guilty for it because she try’s her hardest she brought me to the doctor a lot of times when I was younger and they always said i would grow out of it but I really don’t think I will i just want it to be gone and I don’t know how to do anything, i have been in so many situation were adults have insulted my diet and friends have moaned at me about it it upsets me so much they don’t understand how happy i would be if i could enjoy food the way they do I get ill a lot because i don’t have the right vitamins and all it make me very sad. is there any advice you can give me to make me eat more foods please i really need it
Janert,
I admire your courage! Thank you for your comment.
There is no law anywhere that states you have to eat like anyone else thinks you should. It’s difficult to offer you any specific suggestions without more information. If you want some support, please send me a private message through the Mealtime Hostage Facebook page or @mealhostage on Twitter.
I am 37 years old and have been dealing with this for as long as I can remember. My mum says that I used to eat everything when I was younger but since my early teens I have been very restricted as to what I can eat without gagging and vomiting. In my own mind I have related this to being forced by my dad to finish food on my plate, eating cold peas and being sick, but my mum says that only happened once because she had a go at him for it and I ate normally after that. I have tried, with little success, to try new foods on occasion but usually end up having to run to the toilet as soon as they are in my mouth. I have a lot of problems eating out as I am terrified that there will be something in a food that makes me sick, so I always stick to really plain meals that I know exactly what is in them. I have been asking my doctors for help for years but they seem to think it is a mind over matter thing and that if I try hard enough I will be able to eat the foods that make me sick. I have tried doing this but can’t get over the gagging reflex when they touch my mouth. I think that my issue is more to do with texture than taste, as I there are foods I used to be able to eat but no longer can, for instance, I was eating tinned peaches and there was a little bit of skin on one which I felt in my mouth and made me gag, and now, even though I know I like tinned peaches, I can no longer put them in my mouth. A lot of people just call me fussy, or make fun of me as they don’t seem to understand that I don’t chose not to eat these foods, I physically can’t no matter what I try. I do eat more foods now that when I was younger but I still wish I could eat normally. I know that my diet lacks a lot of nutrients and it worries me what my diet will do to my body as I get older. I just hope that now this is a recognised disorder that my doctor might refer me for some help to try and sort it out, it have been over 20 years that I have struggled with this.
Beth, I’ve been looking for an article I read about a restaurant where people eat in the dark. Even though diners choose their meal, they don’t know where anything is on their plate. It takes a very adventurous eater to be successful in this extreme, sensory deprived environment and illustrates how much we depend on our senses to determine the level of enjoyment or terror we will experience from eating.
Once food is inside your mouth, it’s out of your visual range. How you translate the sensory input of feel, smell and taste will have a huge impact on how you react to it. If you want to expand your dietary repertoire, slow down your experiences with food and build trust in the food you want to eat.
Also, take a look at the link to Satter’s Hierarchy of Food Needs. It’s a powerful piece of eating psychology that encourages you to assess your current attitudes toward eating and to accept that as “normal for you.” Build from that plateau at your own pace. “Normal” is a subjective label that is different for everyone.
The “root cause” must be organic in nature. Some brains are wired to interpret tastes/textures differently. My son vomited his baby food meats every time he tasted them. At just months old he began his difficult journey, and I grieve knowing he has been riddled with anxiety over life-sustaining sustenance for 25 years now. He has never been able to keep down meat, and his daily intake is limited to a very short list of crunchy foods and protein drinks. I never heard of another child reacting that way so early in life until my cousin recently revealed her son did the exact same thing! So may there be a hereditary link? I hope that the latest research will lead to a treatment in his lifetime.
I am a Speech-Langauge Pathologist who specializes in evaluating and treating clients who have eating challenges in my private practice, Help Me Speak. http://www.helpmespeak.com
I am trained in SOS (Sequential Oral Sensory) Approach to Feeding, Food Chaining, Talk Tools Oral Placement Exercises, Beckman stretches, and incorporate my own Help Me Eat techniques. I am also a mom to 9.5 yr old twins–a boy and a girl. My daughter has SED. Some of my clients are picky–eating 20-30 foods and some are more “problem” (I don’t like that term)–eating less than 20 foods. MOST of them have oral motor and sensory difficulties—even mild challenges can make a negative impact on eating. I view SED/picky-problem eating (whatever you want to call it) as having a variety of layers of difficulty: the core is usually some sort of medical difficulty (history of reflux, food allergies, sometimes a choking incident), then sensory challenges, then oral motor deficits (range of movement, control, stability, coordination, dissociation of the jaw, lips. tongue), then, of course, anxiety about foods–which is often viewed by others as “behavior” issues. Behavior IS communication! So whenever a person has a “behavior” about food, he/she is trying to communicate something about the food. “I don’t like it” is just the cover for the REAL issue (see above).
So I am glad to hear that SED was added to the DSM. BUT my biggest concern with this addition of “Avoidant/Restrictive Food Intake Disorder” is that insurance companies will NOT recognize the complexity of this disorder and will mistakenly think that it is a dx that should be treated solely by psychologists. NO!!! If the underlying oral motor and sensory challenges are not addressed, then a client is not as likely to add new foods. It NOT a mental difficulty. Any ideas on HOW to get the complexity recognized by the DSM and insurance companies??
No, there aren’t enough studies on SED. The Duke study is a great first step. More are needed. The type of studies may be limited since no two clients with eating challenges have the same characteristics.
In my practice, Help Me Speak, we are happy to work with pediatrics and adults. We do accept BCBS and can submit to other insurances.
Barbara, thanks for your comment. I will add Help Me Speak to the resources directory.
You bring up a very good point. There is a lot (not all of it good) information about picky eating. I wish there was more information on feeding issues – what parents should look for and when professional feeding therapy is necessary. If you would like to guest post on the subject, please contact me at mealtimehostage [at] gmail [dot] com.
I’m pleased to see the DSM finally recognize that a childhood feeding disorder can persist into adulthood, and open the doors for further study. I share your concern that ARFID will be viewed solely as a “mental disorder”, when as you’ve pointed out – finding the root cause of food refusal is CRITICAL!! The media has already jumped on the “picky eaters are mentally ill” bandwagon. Spot the misinformed! Sheesh!!
There’s no reason this shouldn’t be considered a disorder. It’s not something I can help or have any control over.
Just like many of you, I have suffered with this SED for my entire life. I am now 23 and it seems to be getting worst, some of the foods that I deemed safe, I no longer eat like green beans or corn. Growing up my mother tried to force me to eat. My aunt on the other hand catered to me. At 23, I eat ground turkey breast, skinless and boneless chicken breast and every once in a while ground beef or shaved beef used in cheese steaks. I can remember my mom trying to get me to eat chicken as a kid and I cried unto I was sick because I hate the texture, the taste and the over all mentally experience (at this age I really didn’t care for meat at all). I don’t drink milk, I was born premature and I didn’t process it as a infant, so I was giving soy milk. I don’t have a problem now with cows milk but I will not drink it, I’ve tried but I simple can’t get much of it down. I did occasionally drink chocolate milk as a kid but I don’t anymore. I just started back eating yogurt in the last 5 years. I only eat a few cheeses. I eat a few different vegetables and fruits but things that I once deemed safe have turn on me. I’m developing food allergies or intolerant to food that I once loved. For the last two and a half months I haven’t been allowed to eat peanuts, which in my mind cut out any product made in factory that process peanuts or any nuts for that matter. On my 23rd birthday, I ate cookies that may have or may not have been contaminated with peanuts which sent my body into attack mode. Let just say the cookies got tossed. I also have gastritis which cuts out pizza and spaghetti which I did live on for most of my high school career. I can’t have citric products, I really didn’t like those that much anyways but there added to growing list of what I can’t and won’t eat. The last new thing I tried was spinach artichoke dip to find out I’m allergy to artichokes the morning after. When people ask what food don’t you like, I tell them it easier if I tell you what foods I’ll eat. At 23, I’m to damn old for this and all I want to do is leave a normally life. I’m thinking about join the Air Force and the stories my Mother tells me about the food she’d been served in the Army is mentally draining for me. They won’t care about what I do and don’t eat. They won’t care that I don’t like smelly foods or that the texture of fat makes me gag. They won’t care if all I eat is bread which I also don’t happen to care for that much and water which has always been deemed safe for me. I’m really at a point in life where I have to make a decision upon graduate on what to do next because school loans don’t pay themselves but this food issue as I’ve always called it, can literally put a fork in the road. I guess this is what they call wishful thinking. I wish there was a real answer, why am I so different.
Picky Liz, Wow.., so much going on here. Growing up – being constantly pressured to eat (forced and catered to), with food sensitivities/allergies added to the mix. It sounds like your body always knew what it didn’t need, but no one bothered to listen.
I strongly recommend the services of Dr. Katja Rowell – you can book a consultation through her web site at http://www.thefeedingdoctor.com. She is very familiar with selective eating and has worked with adult picky eaters. I have great faith that she can help you put your future on the path you hope for.
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Aren’t we all? 😉
Hello All,
Thank you for this blog and the accompanying messages. I too and a life long selective eater subsisting on PB&J/toast/Pizza and pretty much any and all “junk food” (chips/crackers/candy bars). On the bright side, as all have mentioned ,my life was never severally impacted by my SED. I have a good job. Travel for Work and fun. Am married with three kids (who are all good eaters). But just now life has thrown a curve. I’ve come down with Celiac Disease (auto-immune disease where you cannot tolerate gluten). So now, at age 38 I’m am forced to cast off the two foods I’ve eaten every single day. Not sure how I’m going to pull this off. I just booked an appointment at a nutritionist who specializes in adult eating disorders. If any one else has some advice as to what sort of specialist I can go to help me through this, any and all suggestions would be greatly appreciated.
Hi Scott,
I will put out a call for suggestions for you. I know you are not the only adult Pe trying to adjust to a gluten free diet.
I’m just about to graduate from high school and I have told myself for years that I would be “fixed” by the time I begin university. Its so not going to happen, because nothing has changed in my diet for years. I have been diagnosed by an eating disorder therapist with SED, and attended thereapy for it for about a year. But it was so terribly stressful that I felt it was beginning to do more harm than good. I’ve been to other therapists from about gr 3 on for other family issues, so I think I was just tired of therapy. My parents said that I began making large cuts in my diet when I was about 3 or 4 years of age, and that I used to eat basically everything that was put on my plate. I havnt eaten any fruits or veggies since I was 3, I hate any sauces on pasta and eat very specific pasta and breads, like cheese but only if melted, specific cheese pizza, lots of chicken strips and fries, certain burgers, and occasionally a well done steak. Other than that I don’t eat much else. Several aromas cause me to gag and almost puke, and even touching or being put ina situation where I have to touch an ‘unsafe’ food can cause a severe panic attack. I don’t want to be this way as it is unhealthy and has had a huge impact on my social life, but its like everytime I attempt to make myself try something new I just shut down and can’t think straight. I just don’t really know what to do anymore and I get so angry at myself for being this way.
Hello, I’m 67 years old and have been a “picky eater” since childhood. I was quite surprised to see this being identified as a “syndrome” and I’ve read through the entries with great interest as I always thought I was the only one who had these limited food preferences.
I’ve been quite happy and healthy all these years, once my parents gave up on trying to change me. No major illnesses or conditions, no surgeries, I hardly ever even have a cold or flu. My weight normal. I’ve led an active life, gainfully employed since my teens, married with children, and I attend parties and events like anyone else.
All I would eat for school lunch was peanut butter and jelly sandwiches on white bread. If my mother gave me cream cheese and jelly on white bread (the old type cream cheese that wasn’t “spreadable” and would break through the bread) it looked so awful I would throw it out and eat a piece of cake from the school cafeteria (since all the rest of the school food was disgusting, cake was the only thing bearable).
I was happy with peanut butter and jelly without fail, and didn’t feel I was deprived in any way. I became even more selective with foods between age 50 and now – stopped eating all meat, chicken or fish because the idea began to totally repulse me (whereas before that it only partially repulsed me). When forced to eat certain foods (like peas) as a child my throat would close and I’d retch. My mother feared I’d get “malnutrition” which was being touted as a danger during those years. She took me too a doctor but the doctor didn’t diagnose any problem since I was healthy and strong. Finally, my father stepped in and told my mother, “leave her alone, she just has an overactive imagination!” He was so right! Most of my “pickiness” centered around the appearance, smell, and texture of foods. And thankfully, my mother relaxed as a result and stopped hovering over me at meals and commenting on what I ate.
Even now, if I have to sit too close to others who are eating “repulsive” foods I feel a bit nauseous but I try to focus away from them and the smells of their foods and/or (best of all!) find a seat at the end of the table where I’m free from others crowding me.
And yes, even when I’m very hungry, I won’t eat a food I don’t like.
I do love and prefer pasta since early childhood, with plain tomato sauce only, perhaps some grated cheese; pizza (thin slice – and the only topping I add once in a while is mushrooms); cheese, bread, cereal, salad with dressing (to kill the taste); eggs sometimes; yogurt, ice cream, a couple of veggies, potatoes any style, and some fruits. And THAT’S ALL!
I “conceal” it very well in public … but NOT because I’m embarrassed or ashamed; rather, because I would really resent having to hear others’ opinions regarding what I like to eat when it’s none of their business. It’s easy to do, it became second nature so many years ago: Most restaurants have something that can pass as a “meal”. Failing that, at a dinner where you have little choice (like a wedding), leave the meat or push it off to the side so no one knows whose it is and ask for a double portion of potatoes and or salad. My husband is a good co-conspirator and will often eat what I don’t like. Also, the prevalence of anorexia and obsessions with diets has made it quite a commonplace thing for people to request a salad or some specialty dish as a substitute for other foods anyway. No one really cares. If absolutely desperate I slip the waiter money to bring me a small plate of plain pasta and sauce, or some kind of salad. That’s only happened about 3 times in my entire life, but trust me, money talks if nothing else works. If visiting someone’s home where they are going to serve a meal, (yucch) I offer to bring a bowl of delicious pasta. I make fun of myself and tell them I’m a weirdo who only likes pasta and potatoes. The hosts are generally thrilled to get this great “hostess gift,” and I get to eat what I like.
Once in a great while some nosey person will glance at my plate and ask “is that all you’re going to have?” and I just say, “oh don’t mind me, I’ve been a picky eater all my life.” And for some reason, that shuts them up! The key is to NOT act like you think there is something wrong with you – that only attracts pedantic busybodies will hone in on others whenever they sense even a hint of insecurity. Act confident and comfortable and they’ll soon lose interest and find someone else on whom they can inflict themselves! Actually, I’ve come to believe that it is others’ preferences in food that are weird, not mine!
Also I think (from personal experience, only my own opinion) that the worst thing you can do is push foods on your child, ridicule, or in any way focus on your child’s eating. Just try to give the child a wide variety of things he/she might like and let him/her explore. Leave the ones he/she likes, and take away the rejects WITHOUT COMMENT. Keep trying new offerings, but again don’t quibble. Don’t make it into a power struggle, you will only hurt your child and make yourself sick. I believe my father’s understanding attitude saved me from a lifetime of misery by getting my mother to relax and leave me alone with my food preferences. I survived well and have no intention of changing!
Good luck and best wishes to you and I hope my experiences are helpful to someone out there.
Thank you! For me, this was the best response of them all!
Thank you for sharing your experiences! “I’ve come believe that it is others’ preferences in food that are weird, not mine!” Beautiful statement! Everyone should be able to enjoy what they eat and just let others do the same. 🙂
I am crying after reading all the responses of people who have this. My son is 13 and I have watched him eat only certain foods for about 10 years now. I have lost hours of sleep at night because I have terrible dreams about something happening to him because he refuses vegetables and fruit. I will cry for hours. He is definitely smaller than most of his peers but he is not the smallest. He gets teased about that but he seems to be a happy kid. He is popular and has friends and will go places and eat whatever he can eat. It does not seem to phase him but it is killing me. When he has tried new foods he ends up gagging and in tears. I feel like I have nowhere to turn to help him. I have searched all over and I get the “he will eat when he is hungry” or “he will grow out of it”. I am sorry but I do not see an end to this disorder. Our medical field needs to seriously look into this. I have always wondered if the hernia/surgery he had a 15 months old affected him in some way or if it is just the way he is/will be. I have learned over the years this is not a choice people with this make. There is something going on that is causing them to reject food. It makes me so mad when people look me square in the eye and say, “Make him eat whatever is on the table”. Well, he would literally starve himself if I did that. At least he is getting some food and some sort of nutrients in his body. He does take a multivitamin every day but I had to get him the adult gummy vitamins. He can’t swallow pills because he gags on most of those. When I first said aloud, “I think my son has some sort of eating disorder” people (ignorant people) told me boys hardly ever have eating disorder so my son probably doesn’t have one. Ridiculous. I know my thoughts in this post are all out of order and crazy looking but I, myself, suffer from ADD and I am all over the place sometimes. Sorry if it is confusing. Thanks for listening.
🙂 I’m fluent in ADD. I also understand your concerns.
It irritates me to see good advice tainted with malice, not in a deliberate sense but to apply it as it’s been offered to you has great potential to do a lot of harm.
The healthcare community does need to reconsider their position that SED will go away on its own. I now believe it is treatable, the younger the child, the better. Family physicians need to take parent concerns more seriously and direct parents to better resources.
“He will eat when he gets hungry” is ridiculous advice. He will eat enough to satisfy his hunger is true, on the condition that the parent provides food the child accepts and is within their range of familiarity and eating ability.
“Make him eat what’s on the table” ? No one, adult or child should EVER be forced to eat. People should live by the advice they offer or stop offering it.
Accurate statistics are not available on SED, and won’t be until it can be formally diagnosed and studied, but the current opinion states that it affects more boys than girls.
If you are on Facebook, join Mealtime Hostage -The Group. It’s a private place to find support and suggestions for your son and for your own peace of mind. I hope you will join us. 🙂
Worriedmom, I feel your pain. I have a son that is almost 23 and has been a selective eater since about 2 or 3. I have heard all the same, ‘he will eat when he is hungry’, ‘he will grow out of it’. When I found this blog I cried and I shared it with my son. It helps knowing that this is an actual ‘disorder’ and not something that I did or didn’t do. I love my son and accept him for who he is. I just want what’s best for him. Don’t push what we believe to be ‘normal’ on your son, it will only create more stress in his life. Love him for who he is, that’s how you can help him the most. 🙂
Hi guys thought you guys would like this link, spreading awareness is important.
http://www.abc.net.au/radionational/programs/rnfirstbite/beyond-fussy-eating/4272236
I’m so glad I found this blog. My daughter I believe has SED, for a long time I blamed myself, because when she was a baby I wouldn’t let her have food with sugar or salt in it, thinking I was doing the right thing, then my son came along and I let him have what he wanted, and now he eats anything except mushrooms and corn ( He told me that he had a bad experience with it at daycare and refuses to touch it now). But looking back (she is now 13) I think she had SED from around 3 years of age, she had to have liquid medicine and we had to have chocolate on hand, so when she had a sip she would have a bite of chocolate to hide the flavour, this still goes on today and she refuses to take tablets. Also when she was a toddler she even refused to eat hot chips, but would eat sausage rolls and some meat, now she eats hot chips but no meat. Her current diet includes – pasta, herbs, olive oil, butter, potatoes (but not mashed) white bread, peanut butter (crunchy only), cucumber, green capsicum, lettuce (only some varieties) cheese, pizza (bbq sauce and cheese) noodles, ice cream, jelly, sometimes yogurt, some nuts and most cakes depending what’s in it. We have progressed a lot really, for a long time she would only eat bread, pasta and hot chips, as she has gotten older together we have experiment by combining the things she eats to make new meals for her (and she makes most of them) eg: pasta with a herb and olive oil sauce, or her favourite salad vegs in a bread wrap. Also we try cooking her favourites differently and have had success with doing potatoes a lot of different ways. Once she told me that food scared her, now she tells me its pressure to eat that worries her. I am trying to encourage her to get help if she wants to.
Good luck with your son, I feel your pain xxx
SED describes me so well. When a certain food has that loud, distinct “crunch” to it, I start to gag and retch. When a food has a string fishy odour I retch. When a food has a strong flavour or a very bland flavour I gag.
I have gone through 16 years of being told that I choose to live this way and that there is nothing wrong with me. Years of other kids teasing me and saying I’m weird. Years of avoiding parties and mealtimes at friends houses because I was scared that they would ridicule me even more. Years of anxiety and stress over trying new foods. But most of all, years of missing out on nutrient that these foods offer, thus returning to a diet of foods that are unhealthy, causing me to gain weight from a young age.
I call it SED and some friends understand, but their parents and other friends don’t.
I didn’t choose this. Why would anyone choose to be teased, ridiculed, outcast, sick, fat and unhealthy at a time when self image and peer pressure is so prevalent?
I hope for the sake of others that this is diagnosable soon, if only for more people to understand.
Reblogged this on QuirkyGirl12345.
I am 40 years old and believe that I have SED. On the chart, only one characteristic doesn’t apply to me. My diet primarily consists of cheese or pepperoni pizza, macaroni & cheese, grilled cheese, spaghetti, some cereal, bread, hot dogs, and french fries. I can usually eat salad with no dressing, grilled chicken with no sauce, and plain turkey if I need to. I usually eat one meal per day. Friends and coworkers comment about how I never eat. I haven’t told them about it. I hate my limited diet.
I recently found out that a friend from church has equally limited food choices, although we eat different things. Our wives were talking and they got onto the subject. He is the first person that I have met that has a similar situation to me.
I have been ridiculed, laughed at, and yelled at because of my eating. I’ve gone days without eating to avoid the situation – a 24 hour fast is a walk in the park for me. A waiter on a cruise laughed at me every night because I wanted plain pasta with tomato sauce for dinner and vanilla ice cream for dessert every night. I was made fun of and became the center of attention at a business dinner because I ordered spaghetti instead of a fancy Italian meal. A colleague frequently makes “plain hot dog” comments because I ate hot dogs at a BBQ restaurant we visited for lunch. My family arranged the catering for the rehearsal dinner for my wedding and intentionally had nothing there that I would eat. These are just a few examples of what someone with this type of disorder has to endure on a daily basis. I often just say that I’m not hungry or that I have an upset stomach to avoid the issue.
The mental, social, and physical repercussions of this disorder can be severe. I have found a forum for people like me: http://www.pickyeatingadults.com/.
I am so happy to read all these comments! I have an almost 3 year old son who is very afraid to try new foods. I thought that he was just being a normal toddler in a picky phase, but found it weird that he gagged on things that I MADE him try. Even if he put it in his mouth he would still gag, so it wasn’t a control thing.
When he was a baby (about 12 months or so) I tried giving him the Gerber Graduate meals…he gagged and threw it up on the first try. He was fine with baby food, but when I introduced toddler food with more texture, he always gagged on it. I now think he is neophobic. His cousin (my husbands brothers daughter) is the same way, but worse! Although she is about 2 years older than my son. She used to gag and throw up if you EVER made her eat anything. She is 5 now and still has the problem, but doesn’t actually throw up anymore, just gags. Also, my husbands cousin has a huge eating problem as well. She avoids a LOT of foods, never has any fruit and puts ketchup on basically everything!
I think genes have a lot to do with it. I was a very picky eater as a child, but am not nearly as picky now (I am 26). I still stay away from ALL seafood, and if there are any mushrooms (for example) on a pizza or something, I will sit there for 5 minutes (or as long as it takes) picking every last piece off! To this day, I still prefer my foods not to touch, but will never gag over it. And if I don’t know what is in a food (at a buffet, or potluck), I will not eat it.
I tried doing the “he will eat when he’s hungry” thing, but it really doesn’t work! He says a few times a day that his tummy hurts (that’s what he says when he’s hungry), but I don’t know what to give him. It breaks my heart to know that I am not giving him the nutrition that he needs, but he just won’t eat things. There’s only a select few choices that he will even eat! But now that I am more aware of these issues, I feel I can better deal with it.
I started a food log yesterday for him and will be taking him to the doctors in about a week or so to discuss it. The good news is that last time I was at the doctors, he said that my son seems healthy and he is growing as he should be.
Thank you for posting this log for everyone to be aware of these issues! I am disappointed that this is not documented in the DSM-IVtr. I think more doctors need to be aware of this issue.
I am 21 years old with SED, and I’m reading these posts with tears in my eyes – I am SO relieved that there are other people who have been through the same problems as me. I genuinely thought I was the only person who was like this, it feels so good to know I’m not the only one!
I first started having problems when I was a baby and it never really improved until I was about 18 years old. For the first 18 years of my life, I ruled out virtually all food groups – no fruit, meat, vegetables, nothing. The few ‘safe’ foods I was limited to were bread and cereals, and the occasional dairy products (like milk and yoghurt). It sounds crazy but my main meal of the day was marmite toast, every day, every year, for so many years… yuck! When faced with trying new foods I went through all the usual SED symptoms – extreme anxiety, gagging, vomiting, panic attacks. To anyone who doesn’t understand, the fear of trying new foods is so intense, it’s hard to explain. Having ‘unsafe’ foods in my mouth really is the most horrific thing I can ever experience – it makes me want to jump out of my own body, it feels like I’m tearing myself apart. For most people, eating food is an easy, enjoyable part of life, but for me it’s always been a curse. What no one seemed to understand is that I was not a ‘picky eater’; I wasn’t doing this for attention, I wasn’t trying to be stubborn. I wasn’t a naughty child and I didn’t want to make life difficult for my parents – I really didn’t understand why I couldn’t eat. I found the whole thing humiliating, and just wanted to be normal. But eventually my parents stopped trying to fight me and just accepted me for who I was – marmite toast and all.
The first time I made a significant breakthrough with my eating was when I left home to go travelling… Spending three months in East Africa, I was forced outside my comfort zone and put into situations where I was unable to eat my comfort foods. Shit.. as anyone familiar with SED will know, I would rather starve than go without my comfort foods. And at first, this is what happened – I rapidly lost a lot of weight, and became very sick, a long way from home. I then came down with malaria, and the situation suddenly got much worse. But then, at some point during this period, something in me just clicked, and I realised that I would either have to come to terms with my issues with food, or go home! I chose the former, and began to slowly and painfully change the way I eat.
What really made a big difference was having the support of my boyfriend, a few years later. He tried a new approach, and was more influential than any of the therapists, psychiatrists, hypnotherapists or nutritionists put together. Rather than focusing on the foods that I couldn’t eat, he focused on those that I could eat – the foods that were in my ‘safe’ group – and tried to expand this group. He asked me WHY I could eat these foods, and together we began to discover which qualities made these foods acceptable to me. We realised that it was more about sensory experience than anything else, particularly texture and smell, so he tried to integrate similar tastes and textures into my diet. For example, he saw that I liked toast, so we tried cheese on toast. When I enjoyed that, he added ham – and boom! I could now eat meat. It went on from there, and thanks to his patience and understanding, I have slowly expanded my diet to include all types of meat, fish, fruit, dairy and carbohydrates (although no vegetables or pasta yet – fingers crossed though!). For the first time in my life I actually gained weight, my hair grew thick and shiny, my acne cleared up, and my skin actually changed colour (it used to be a weird yellowy blotchy kind of colour but now it looks much more normal). I am visibly much healthier and happier, and I have so much more confidence in myself.
Don’t get me wrong, I still face many problems with food from day to day, and I don’t think I’ll ever be completely ‘cured’ of this disorder. I will always have difficulties, but I think with enough practice and exposure to food, I may one day begin to enjoy it. The bottom line here is that SED is most definitely an eating disorder, a phobia of food, and I really resent being referred to as a ‘fussy eater’. It trivialises what I’m going through and makes me sound as if I am actually doing this on purpose – this could not be further from the truth. I have never chosen to have this disorder (who would?!), and I can’t remember a time when I wasn’t afraid of food, it’s just a part of who I am. Overcoming my issues with food has been the greatest achievement of my life so far, and looking back at my childhood, it’s unbelievable to see how far I’ve come. I’ve still got a long way to go though. As with any disorder, change is incredibly difficult and painful, but it really is possible!!
Oh, Emma! I’m reading your comment with tears in MY eyes!! Thank you for sharing your struggles and your courage. 🙂
Ooops sorry for that massively long post, it just feels really good to finally find people who understand it all! xx
I loved every word. 🙂
I am so glad I found this!!!! I have three boys 6, 4 and 1. I have done the same things with all of them as far as nursing and food introduction. My 6 year old is picky and is finally getting better about atleast trying things before he says he doesn’t like them. My 1 year old will eat just about everything. My 4 year old suffers with this. I have known there was something different about him since I began introducing solids. He would not eat any of them! He would literally gag and or vomit with the first taste and sometimes even smell of ALL baby foods except oatmeal with cinnamon and sugar. He detested milk when I tried to introduce that as well and to this day, he has to have a bit of chocolate milk mixed in his regular milk (which I finally figured out at about 14 months and got immediate disapproval from my in-laws) or he won’t drink it. I nursed him almost 2 years because of this. After all of the comments and disapprovals, the “send him home with me and he’ll start eating” and “he would eat what we’re eating or he’d get nothing at all”, I tried forcing him. Again, he would scream, cry, kick, gag or vomit. Right now, he will eat yogurt, peanuts, fruit loops, cheez-its, pretzels, circle shaped tostitos, cool ranch doritos, fruit roll ups, Welch’s fruit snacks, Oreos, Chips Ahoy, Hershey’s chocolate, strawberry mentos (very few other candies) and popcorn. He will drink almost anything so I try to sneak in the occasional fruit and vegetable juice blend. His favorite thing his half regular half chocolate milk. He will drink up to six 10 oz cups of this in a day if I let him!!! And I found vitamins that he’ll “eat”, Disney Cars.
I am tired of people being mean and it really hurts that my husband’s family is the worst!!! They always have something negative to say. Now they tell him that his baby brother is going to be bigger than him. That he is going to grow up and beat his butt some day. I feel sad for him. I will do anything to help him. I do not want this to develop into social issues and or depression. I am thankful to have found support and plan to get on your Facebook page as soon as I finish this! Thank you!
Oh, Danelle, my heart hurts especially for your middle boy, and it aggravates me to know all of your children are being exposed to such negativity about eating by the people who should be the most supportive. 😦
Please scroll through the FB page to find a link to join Mealtime Hostage – The Group where you’ll find support and suggestions to bring peace to your family meals.
Will do! Thank you so much!
I never found the link 😦
Please check your FB messages under “Other” or check your e-mail.
oh yeah and my doctor told me that because of my eating habits, i might not be able to use my legs when I’m 20. is that true?
Joan, I’m very sorry your friends have not been more supportive to your struggles with food. As hard as it is, try to ignore those insensitive comments. You can build a better relationship with food, beginning with understanding and embracing the very true fact that you are not defined as an individual by what you eat. Personally, I have never heard of anyone eating their way into a paraplegic state. Unless you have some existing deteriorative medical condition, your doctor is only trying to scare you into eating your vegetables. Doctors don’t typically study feeding challenges in medical school and I would be very curious to know what research and facts are the basis for this prognosis.
Thank you!
i have an idea. i read all of these comments and i read about how theyre crying or have tears in there eyes because they thought they were the only one. i want to get SED more… noticed, i guess, around my neighborhood so people know theyre not alone. how should i do this? put up flyers? and how can i do this if i don’t even have the nerve to tell my parents i think that i have SED?
SED is now officially recognized as an “eating disorder”. And, it is treatable.
As a parent, if my child sat down with me and presented a rational, fact based perspective that explained why eating was a challenge, not only would I listen, I would be proud. If you want to improve your dietary variety, you will need plenty of no pressure opportunities to experience different foods on YOUR terms, and to do that at this point in your life, you will need your parents’ support.
I find most people start to get it when I explain it as trying to eat a live hornet. It’s going to take some warming up to, lots of time and still, it may never happen.
And that’s absolutely okay.
You really can become a fully functional member of society and have never in your life, ever, eaten a vegetable.
im a 13 year old girl who i think has SED. my friends used to always tease me about it and now whenever i bring it up they basically say i should just suck it up, eat food, and comment that its not an eating disorder. i agree when hannah weatherly says that people are narrowminded!!!
I have SED and its unfortunate that it isn’t recognized more. It is very hard to do anything that involves food I’ve been teased my whole life trying some new foods gives me so much anxiety I start to cry. People are so narrowminded
I, like some other commenters apparently, also cried when reading this and the comments. I’m 24 and I’ve been a “picky eater” for as long as I can remember. For me, it seems texture is the biggest deciding factor of what foods I can and cannot eat. Things like pudding and jello are some of the worst for me. I describe those foods to people who don’t understand my reasoning for not eating them as “they feel like I’m eating a mouthful of snot.” (Not liking jello sure made my 21st birthday fun, when a friend decided to make Jell-O shots and I tried to gag one down, throwing up in my mouth while smiling and acting like I was having so much fun.) I didn’t even know there was something called selective eating disorders until today when I decided to google picky eating and found information on sed. My family (and I for the most part) have always thought I was so picky because I had to start taking antibiotics on a daily basis as an infant until I was about 7 or 8. I know at one point when I was very young they tried mixing my medicine into my food because it was so difficult to get me to take it (the only flavor of medicine available then was banana and to this day I still have a major aversion to bananas, just the smell of them will make me gag.) so I’m not sure if all that happening when I was so young “triggered” my picky eating habits or if its something else. Luckily, I’ve been pretty healthy my entire life (other than the having to take antibiotics), I was always thin and on the lower end of BMI scales but doctors always said I was healthy. In the back of my mind I’m always worried about my health due to my lack of “normal” diet, and eating socially has always caused extreme anxiety for me. Dating has been difficult (it’s so much fun telling the new guy you like that the only thing you’ll eat at the Mexican restaurant he brought you to is the cheese dip) I find myself very easily embarrassed virtually anytime I order food at a restaurant. Things are even worse lately because a few of my go to protein sources don’t even exist anymore (chicken “tenders” more like nuggets from Burger King, chicken selects from McDonald’s) so now in addition to eating zero fruits or vegetables, I basically don’t eat any protein (the only meat I can eat is chicken, fried although I will eat grilled chicken occasionally, and pepperoni). I am both comforted and sort of terrified knowing that this could possible be SED that I’m dealing with. I have also been diagnosed as bipolar type 2 and may soon be diagnosed with borderline personality disorder after a few more weeks of lots of questions from my therapist. Thank you for putting this information out there, it does give me hope that one day I’ll be able to branch out, try new foods, and enjoy eating dinner with family and friends instead of every meal being filled with fear, anxiety, embarrassment, and guilt.
I am glad you found this information and I want to reassure you that there are thousands of adults around the world just like you. I hope knowing that you are not alone in your struggles with food will help you find the confidence to begin building a better relationship with food, and the self confidence to free yourself from the anxiety and guilt that comes with eating socially. There are some very supportive online groups where you can talk about your struggles, and meet many other adult picky eaters who really understand what you go through. If you can send me a msg through FB, I can help you find them.
I have accepted my life with SED. I have lived with it already 32 years (all my life). I found this article when I was searching for better/faster ways to learn to eat. I don’t seek professional help because I’m too afraid of the thought that I would be forced to eat anything I don’t want to. I have severe traumas from daycare, as my mom mentioned on the first day there that it would be great if they got me to eat and they took it too seriously. Otherwise I don’t really care what other people think about my eating habits. When I was teenager I didn’t care at all. I was perfectly happy eating macaroni everyday, but now I wish to eat as healthy as I possible can. I’ve learned to eat one new food per year, if I’ve been motivated and interested to try. My husband does his best to describe new thing for me (taste, texture, after taste, is it similar to something I already eat etc.). He is the onle one I trust telling me things as they are, other people might lie to me just to get me to taste something. Then I try to think something I eat that would go with it and mix the new thing with it. If everything goes well, I might have learned to eat the new thing (it takes couple tries). This whole process takes about a year. I found this article when I tried to find faster/better way to teach myself to eat without stress and forcing (they only sabotage my progress). I decided to share these little thoughts so that someone might find them helpfull. Progress is possible, but it’s hard and takes time: When I was 6 I could eat 3 things. At the age of 14 I could eat 7 different foods. Now I’m able to eat 19 different food. I don’t intent to learn to eat “normally”. I see it as a positive thing that I will always be able to turn down quite a lot of unhealthy food (jam, jelly, bacon, cake, pie, etc.)
Thank you very much for your comment. I like how you approach new food on your terms, which is similar to how my son approaches unfamiliar food. I am horrified at your childhood experiences with food.
Like I was trying to explain earlier “eating normally” has very little with what a person eats and a lot more to do with how they approach food.
I write as I come across information and at the time of this post, there was little information out there on SED that differentiated it from a childhood phase of picky eating. This particular post was written with the input of several adults with SED, some who wish to add to what they already eat and some who are content with what’s been safe for years. For what it’s worth, there are also many people without SED who, in the context I stated earlier, also do not necessarily eat “normally”.
“For all the quirks that make it so difficult to describe, there is one unifying truth among people with SED. All of them … Every. Last. One… would, if they were able, willingly choose to eat normally.”
No, I would actually really prefer it if I could just eat my safe foods without any trouble from people giving me a hard time or wanting to “fix” me. People making assumptions about what I want has done a lot more damage to me than “indulging” me and just letting me do what comes naturally. I can’t speak for anyone else, but I am fine with not being “normal.”
Signed, an adult with SED
Ray, you misunderstand, or perhaps I was not clear.
As you pointed out, reminders of what is not being eating is a very common complaint, and what you like to eat is nobody’s business but yours.
It’s not normal to critique and comment on someone else’s plate of of food. It works both ways, sir.
I am a 24 year old female and cried reading this. I am a high performing individual, have a masters degree, and struggle with SED. I was taught to believe I am spoiled and immature due to my ratified habits. I eliminate most fruits and veggies, have to stop eating if I find aa tough spot in meat, and gag to the point of vomiting if something in my food is unexpected or got there accidentally.
Welcome! 🙂 I hope you have already or will soon forget what you were taught to believe. I say with confidence that very likely, you are anything but spoiled or immature. You are, most certainly, not alone.
I just found your site after FINALLY getting my daughter’s doctors to hear me. I have known she has had an eating issue since she was in diapers, I started bringing it up to doctors when she was very young, we were sent to child psychologists who told me I was allowing her to control me with her eating. I heard about selective eating disorders a while back but decided to research it more now that we are going to the Eating Disorder Clinic. I can’t thank you enough for this article. Someday soon I hope we are all able to get help for this without hearing anymore idiotic comments.
Thank you for your very kind comment and welcome to the table. 🙂
My oldest son has issues with eating. I always get the “children will eat when they are hungry”
That is complete bull! We tried that tactic and he went three days without eating a single thing and I finally gave in and said screw you to anyone who says that. My baby has issues with food and it’s frustrating that people judge us and say oh keep offering this and that, don’t give in to this and that..etc. I have no idea how to help him. He lives on Breakfast drinks, special K drinks and toast and pancakes. I’ve brought it up to his pediatrician numerous times and she just gives me the “keep trying new foods, he’ll eventually eat” statement every time. Though it’s taken me 5 years to get his dr to even do an ADHD evaluation (which I don’t think he has but he has a lot of energy and it’s hard for him to stay still and I didn’t know where else to start).
Anyway, thanks for the article.. Definitely looking into the book!
Thank you. Unfortunately, a lot of the advice out there is not helpful, something I am trying to educate parents on so they can be better advocates for their own children. I have learned a great deal from Dr. Katja Rowell, author of “Love Me, Feed Me” and I very much recommend her book.
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What a well-written article. I run a site for parents of children with Sensory Processing Disorder and eating issues come up for many of them. I’m linking this article at the bottom of today’s article as another piece of information parents can use to help their children. Thank you for sharing your story!
Thank you very much. 🙂
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My name is Sandy and in May will be 55 years old. I believe I have SED. All my life my entire menu has consisted of: Fried Chicken, Turkey, Bacon, Hotdogs, PB&J sandwiches, instant mashed potatoes, eggs, French fries, pepperoni pizza (Pizza Hut & frozen Mama Celeste ONLY), grilled cheese, plain McDonalds hamburgers ONLY (no other hamburgers), Kraft Deluxe Mac & Cheese ONLY, Campbell’s Tomato soup made with milk, Campbell’s Bean & Bacon soup just the broth not the beans, pancakes/waffles and crackers Ritz and saltines ONLY. The ONLY fruit is an occasional banana sliced on Cheerios. I drink Pepsi and Milk with my PB&J. I eat NO vegetables, NO fruits and very few meats.
A friend of mine sent me an article on SED that described my eating habits to a “T”. I thought I was the only person on the planet that ate the way I do. It is comforting to know I’m not the only one!
To my knowledge, I have no trauma associated with what I eat or don’t eat. My parents tried to “force” me to eat. I have spent many a night sitting all evening at the dinner table, told I couldn’t get up until I ate, with no positive results.
It used to be an embarrassment to me when I was dating. I never wanted to eat out and have to explain why all I wanted was a grilled cheese or chicken fingers with fries. As I aged I was less embarrassed. All of my friends have tried to encourage me to eat new foods. It is NOT that I am being stubborn I just have NO desire to try new foods. They now expect me to bring “my brand” of hotdogs to a cookout or sit and have fries and a coke when we go out to dinner. I am accepted for who I am AND how I eat! I’m no longer embarrassed about having SED.
In the past and currently, I have NO health issues. No high blood pressure, NO high cholesterol. I am not plagued with colds and flus, etc. I’m rarely sick and don’t usually pick-up viruses. And, to top it all off I take NO vitamins or supplements.
I am married, have one son and live a happy life. I am NOT affected by smells and the sight of other foods. As a matter of fact I cook a wide variety of foods for my husband and son. I don’t necessarily touch all of the foods (hamburger and oysters) but I do cook them. I have dinner parties and fix two meals, one for me and one for my guests. Everyone gets a chuckle but I’m not ridiculed. Like everyone else with SED I would LOVE to not have it; but at this late date I don’t think I’ll be changing.
As I learn more about SED and get a better sense of what “eating normally” looks like, I have to admit, I am so pleased to read your comment! 🙂 Sure, it would be nice to have a wide variety of food to choose from, but there is nothing wrong with enjoying what you can eat. Thank you for sharing your story. I hope my son can grow up never knowing what it means to be embarrassed about his eating. 🙂
This is the first time I am reading about this condition and the symptoms describe me alarmingly well. I am probably among those suffering less, since I can come up with about 20 things I enjoy eating. My most prominent problem is not eating any type of boiled/ grilled vegetable that has a soft texture (peppers, tomatoes…). I’m also struggling with most sauces. Gummy looking mozzarella cheese is also on the “no” list. I also have other specific things I don’t eat (like olives and pasta) but that is not related to texture and I can have some on a social occasion. However, if I am served with soft food, I just have to refuse it or risk vomiting then and there. I eat raw vegetables and salads, fruit, milk and derived products, meat in almost any form and cooked potatoes or beans, since they don’t have the softness I was mentioning. My advice for those with similar problems is to try defining what exactly is that bothers them in certain foods, and than try to find creative dishes while avoiding that particular thing. The worst idea is forcing one to eat, because you can be sure they also want to, but they can’t. Imagine the most disgusting thing you can think of and than imagine someone asking you to eat it and you’ll get the point. Anyway, I think it’s something you can manage to live with pretty nicely and in a more or less healthy way and most people around you will just accept it with time. You’ll just be “the one with the weird ideas about food.” No biggy. Oh, and in my case I don’t know that it’s associated with… I probably have some ocd and social anxiety problems as well, I usually come off as a bit socially inappropriate, but that goes as far as an getting into an awkward silence now and again, nothing extreme.
Oh, and some stuff I forgot to mention. I’m 26 and I’ve had this issue my entire life. It gets better with age, since as an adult there’s no authority figure forcing you to eat anything (although my mother would have never forced me as a kid either). Having lunch in cafeterias-> bring some food if you can predict you’ll end up there (It might be just a sandwich). Tell your friends you’re picky with food, but you’ll have your own. Sit with them and eat without overthinking it. Going to a restaurant-> spend a million years trying to find something that only has one or 2 things you hate and ask the waiter whether you can have that without the specific ingredient. If not, order anyway and eat only the ingredients you like (i always go for the soup and only eat the meat). Nobody will keep track of what exactly you eat and what you leave in your plate. Going on a visit is a hard one. I usually accept it, try having a few small bites out of politeness and leave it at that. Going on short trips-> bring as much food that you enjoy as you can. Going on long trips-> starve at all meals and try to find supermarkets to buy biscuits.
Thanks for your comment and the great suggestions. It sounds like you had good support with eating growing up that has helped you cope well with SED as an adult. At least that’s the impression I get from your comment.
I think it’s imperative for parents to help their selective eating children build a healthy relationship with food more than insisting on variety. This is a learning process for us as a family. I hope my son grows up confident enough with what he can eat so he can avoid the discomfort many adults face with eating socially.
I am extremely relived to find this little section here still alive; I would prefer to discuss these things anonymously so this is perfect. Introductions are in place, I’m in a similar place to the girl who posted under the not-so-much-a-name Anon 1; I’m a 16 year old male and I’ve been suffering from SED my whole life. Until last year I had believed myself (as many others seemed to) to be the only one with this issue, oddly enough I found out about after reading an interview of the primary member of one of my favorite bands at the time, a New Jersey punk band that goes by the Shakespearean name ‘Titus Andronicus’, simply googling “Patrick Stickles selective eating disorder” should bring you some results, but I’ll link the original article I read at the end of this, I’m actually extremely thankful that he’s bothering to speak out about this or I probably would have never come to this conclusion, the band’s even recorded a song called “My Eating Disorder”, I wasn’t a fan of the track, but hey, it raises awareness. Back to me. SED has always messed with my social life. “I’m not hungry” or “I already ate” were excuses constantly used throughout my elementary school days, often offending or bewildering my hosts since it was clear to them: I had been at their house since noon, it was now 5 PM, I certainly hadn’t had anything to eat. Field trips were always miserable affairs, I still recall one fifth-grade trip to NYC where, much to my horror, the restaurant we were to dine at didn’t have anything I would eat. In middle school I became much more self-conscious about my tendencies as I realized how important eating was to our culture, I started to avoid going out with friends due to fear of the topic of my diet (or lack thereof) coming up, I still haven’t recovered from my social withdrawal; the lunch periods we had to take were horrifying to me, I would still sit with people who resembled friends, but I would often go out for long walks through the halls or cower in a restroom stall. I’m now in high school and I’d say I’m avoiding eating in public more than ever: I don’t go out with friends, I don’t take a lunch period and I don’t even entertain the thought of field trips. My family still doesn’t understand my condition, but I can’t blame them, I’m too anxious to even say “It’s not that easy” in response to their futile inquiries of why I don’t try new things, let alone tell them that I suffer from a little-known eating disorder. I want to get help, but I’m just so embarrassed by this thing. I have a doctor’s appointment next week and I hope to finally be courageous enough to say something about SED (the idea that he might not know about it terrifies me), I’m even entertaining the thought of submitting (anonymously, of course) a slightly re-worded version of what I’m typing here to my school’s newspaper.
Felt good to type that all out, wish me luck!
Thank you for your comment! I will check out that link, thanks! 🙂
I wish you much luck with your doctor. Be prepared to be misunderstood. I recently learned that most general practitioners do not study feeding disorders in medical school. I suggest bringing all available literature on the subject as well as your history that explains just how anxious eating socially makes you feel.
There is a quote that says “Love it for what it is, not for what it isn’t.” Never let what you can’t eat define who you are as a person.
Good luck!!
Hey, Im a 14 year old girl and I completely agree, I honestly would rather starve than eat anything but my ‘safe’ foods. As a child my parents tried everything trying to get me to eat even my primary school gave up and let me eat my own food. I lived off of dry bread, water and cetain fromage frais (spelling?). Now I eat plain pasta and noodles/rice and plain meat for most meals, and from personal experience I know the social impact can huge. School camps and trips to other countries especially. The worst is when people don’t understand, comments like ‘stupid’ and ‘attention seeking child who was spoilt as a kid for choice’. On school trips I will go the week without eating. The problem is unlike anorexia nervosa and bulimia not many people know/ recognise this as more than the child being awkward and believe me and every child when I say I would like nothing more than being able to eat normally 🙂
I thank you for your comment. My son is only 7 and social events can already be awkward. I never really appreciated how much eating plays into the social experience, especially in adolescence.
Just know that you are not alone.
Thank you 🙂
I learned at my SOS feeding training that gagging and vomiting can be a physiological (i.e. not anxiety-based) reaction for sensory reasons. They explained that some kids are so unable to tolerate, for instance, seeing foods, that it elicits an uncontrollable vomit reaction. So it doesn’t necessarily have to be medically based, although that’s obviously important to check out as well.
I have a 5 year old boy who will not eat fruit, meat or vegetables. He hasn’t done so in about 3 years. Doctors tell me he is fine and growing so don’t worry he will grow out of it. If I give him any new food to try he always smells it first the. Refuses or will take a bite then gag or sometimes vomit. It has been very difficult with Kinder and now school lunches as the teachers don’t understand and tell him some of the food in his lunchbox is “sometime fo od” but if that’s all he likes what else can I do? Is there any further help for me to get for him. Doctors don’t seem to give me any help.
Deb,
I’ve said this here before, but I recommend you look for a Speech-Language Pathologist or an Occupational Therapist with experience working with children with feeding disorders (different from eating disorders). You can read a bit about my journey with my kids and how therapy has helped here: http://www.foodforthoughtlinds.blogspot.ca/2013/01/feeding-progress-since-sos.html
I share your frustration. I recommend reading “Love Me, Feed Me” by Dr. Katja Rowell. Her experience helping adopted children overcome food anxieties has been invaluable to my son and our family. In the meantime, be very mindful about removing all forms of pressure from the table. No forcing, bribing, begging, rewards, praise… even watching to see if he’s eating can be seen as pressure. Make sure he always has something he can eat along with what the family is eating and if he doesn’t want anything new, let it go. If your doctor says he is growing well, trust that your son is not in any danger. Trust me, I know how difficult that can be.
As for school, the teacher’s interference infuriates me. I started sending my son to school with a note in his lunch that says, “I trust my son to eat as much as he wants from what I have provided. Even if that means all he eats is ‘dessert’. This should make your job easier. If you have any questions, please contact me at XXX-XXXX. If he needs help opening containers, I thank you for that help, but otherwise, he should be good to go.” I tell him to hand that card to anyone who questions the contents of his lunch.
Have you investigated the gagging and the vomiting? Is that because he is anxious about the food or is there a medical reason (ie swallowing or digestive disorder? Allergies?)
So glad you like the lunchtime card! I have it as a PDF parents can download on my website under resources, it’s also in the back of the book. I was so thrilled when one of M’s preschool teachers came up to me after a workshop and said that they instituted an “open lunch” policy in their classroom and the kids were doing better, and the teachers didn’t have to argue with them to eat! She shared that a child in another classroom where she was forced to eat would cry and vomit every day at lunch, and that it stopped the very first day the child was transferred to the “open lunch bag” room. This is all so complex! As for children who tantrum or vomit at the site of foods, my experience has been when ALL the pressure is off to get them to interact with the food (kiss, blow, lick…) that improves quickly. One client called three days into the Trust Model and basically said, “I can’t believe this. I sat next to him eating oatmeal and he didn’t react at all.” This was a kid who used to tantrum at the site of the food until the adult moved to another table with the offending food. Complex for sure! We need to be sure to rule out medical issues, but not forget the anxiety and pressure piece…
I love the lunch card idea! The post on your FaceBook page was very timely. I read it just when TJ was having issued with his lunch at school. Thank you for that fantastic idea! 🙂
My child definitely has the signs of a Selecting Eating Disorder. Around the age of 3 he began to eliminate all fruits,vegetables and meats from his diet. Twice now I have worked with Behavioral Therapists who taught him first how to cope with Anxiety associated with eating, then they taught me how to slowly expand his diet. We also use a ‘Sneaky Chef’ cookbook to include some additional fruits and vegetable purees into his diet in baked or cooked food. (applesauce, pureed blueberries, mild squashes,(baby food versions work well) ground nuts, ground flaxseed, pureed beans, etc. )
The process for adding new foods is one where we look at several foods that he does like then see if they can be combined to make a new food. (Example: bread, cheese make cheese sandwich.) Sometimes the process was very slow… had to cut bread into sandwich like pieces. Once he was used to that, cut cheese into sandwich size pieces. Then progress to eating cheese on 1 slice of bread, followed by adding the second piece of bread a week or two later. This can then progress to grilled cheese.
It took a little coaxing with dessert type foods before he tried the example above. ( oreo cookies, ice cream – let him make an oreo cookie crust with ice cream filling).
A second process used was to buy very similar items to food that he liked, but perhaps in a different shape – pasta is a good example. Once he became used to eating pasta in all shapes, he became more curious to try different sauces… first butter & parmesan, then tomatoe, then alfredo sauce). We used this process to get him to eat a variety of breads, cereals and then breakfast foods.
At the age of 5 my son ate 10 foods. Now he eats hundreds. He still doesn’t like many fruits and vegetables, but eats enough ‘hidden’ ones that he gets adequate nutrition. We also found a chocolate nutritional drink that he loves that ensures that he gets enough of all of the vitamins and minerals. We compare it to chocolate milk.
There are some good Behavioral Therapists that do specialize in working with children who have this problem. You just have to search around different practices until you find one that addresses these problems with children.
Katie, thank you for your comment. It’s encouraging to hear stories of kids who do “grow out of” their selective eating with the right help. I like to believe that it is possible.
We have not had the same success with the Sneaky Chef technique. TJ really needs to know what he is eating because he has this uncanny ability to find things that he believes should not be in his food. I’m not willing to play with his trust.
Every child is different. If he’s up to it, he will accept a wide variety of fruit in smoothies and pancakes without having to hide it on him. In that sense, I consider us lucky. It just depends on how comfortable he is with food at the time.
Because of this latest hiccup with school, we will soon be able to address the anxiety. From there, hopefully, expanding his diet will be less of a challenge. Hopefully.
To discover after all these years that we didn’t cause this problem with our daughter has been an albatross lifted off my neck. My husband and I love to cook and never understood why mealtimes weren’t normal at our home. From childhood gagging to teenage refusal, nothing changed. Doctors saying she’d outgrow it were false and even offering to pay her to eat didn’t work. Sadly, we tend to avoid social engagements that involve food. Are there any support groups we could join online or in the California bay area?
Geri, I don’t know of any regional support groups. Online, however, there are some great ones on FaceBook.
Mealtime Hostage FaceBook page posts links to articles and resources as I find them.
Under “Where to Find”, there are two online support groups listed under the sub heading “Others Like You.” I update this page regularly with recommended health professionals that have some understanding of SED.
There is also a small but growing collection of published studies that document food neophobia / selective eating. As I’m sure you have experienced, few physicians acknowledge that SED even exists so it often helps to have medically peer reviewed research to back up your concerns.
Ever since I was about 4 I have had a severe eating problem. You should know I was diagnosed with OCD at a young age as well. I recall only eating oreos and chocolate milk for a long period of time. My family grew very tired of me not eating anything other than oreos and chocolate milk and tried many times to force me to eat other foods. I would either throw up right after ingesting it or simply refuse to eat it. I broke every single one of my strict relatives I was sent to “correct” my problem eating. Seeing as that I would rather starve myself than eat anything new they couldn’t change my will. I got heavy from only eating oreos and chocolate milk and developed bulimia in fourth grade and instead became wafer thin and was diagnosed with severe anemia. After I grew out of my bulimia I found new and healther comfort foods. Granted I am not fond of many fruits or vegetables. Only like pickles, carrots, and small oranges.
After awhile my family just accepted my eating as strange and I used to avoid gatherings with people unfamiliar to my overall pickiness with food, but now I do attend events on occasion. Now, as an adult I have adapted to telling people that I only eat certain foods in my home, and I have a hard time trying anything new. Once in awhile I will in fact break from my ties and find something new I like to add to the select things I eat usually when I’m starving, at another persons house, or on vacation. However, I will never eat tuna, beans, onions, or anything too soft. My diet consists of; nature valley fiber bars, protein shakes, carne’ asada tacos without onions, rits snack packs, specific cereals and brands, healthy soup, oranges, carrots, pickles, lunchables pizza, lean pockets, kellogs low-calorie morning sandwiches, grilled cheese, and specific noodles. As well as my coffee, OJ, toppings, and tea is brand oriented as well. I have always thought there was no one out there like me with this problem. It has made my social life very difficult over the years and I know I’ll struggle with this all my life, but it is nice to know that I am not the only one and there is a name for it.
I am so glad you found this post and thank you for your comment.
You are so not alone. I don’t know if you are familiar with the Duke Study, but the preliminary report states that they accepted almost 7,000 of the 11,000 completed surveys on adult “picky” eating. I wonder how many more adults (and children) are struggling with food, unaware that they are also not alone.
I’m glad that you are no longer one of them. 🙂
I’m an SOS-trained Speech-Language Pathologist. I just wanted to make a distinction between eating disorders and feeding disorders, as what you describe here on your blog is really a feeding disorder. As I’m sure you already know, it is not psychological in origin, as anorexia/bulimia.
Thank you very much for your comment. 🙂
I understand your perspective – distinguishing a feeding disorder from a mental disorder (anorexia / bulimia). And it is very appreciated. There is enough anxiety with this thing I’ve come to know as SED. The stigma has already begun with its expected addition to the DSM-V and it is really not needed.
What is needed, is recognition.
There are certainly psychological aspects that develop and/or contribute. As for determining if it is psychological in origin… I only have the resources available to me to work with. This one for example:
Click to access EDArticle.pdf
This document from Stanford School of Medicine includes Selective Eating Disorder as 1 of 4 diagnostic categories under the EDNOS category.
“The overriding similarities among these diagnostic criteria are the lack of abnormal cognitions and morbid preoccupation with weight and shape.”
Most tend to agree, as do I, that more research is needed.
Thanks for your response.
I should have added that I am also mother to two young problem feeders. I suspect that since attending SOS, they may now be classified more as picky eaters… though perhaps that is only wishful thinking??? It’s hard for me to tell sometimes… In any case, all of that to say that I understand this from a parental perspective way more than I do from my role as an SLP.
I was not actually even aware of the term selective eating disorder until reading your blog. At SOS, they used the terms feeding disorders and problem feeder and I’ve also heard restrained feeder be used as well. I wonder if this was purposefully to make a distinction between this and the definition of selective eater that you provided. As the quote you gave saying “abnormal cognitions and morbid preoccupation with weight and shape” certainly does not apply to the feeders that SOS is designed to treat. I can also say that this term wouldn’t apply to my kids (14 months and 2 1/2 years), who are problem feeders due to sensory issues (both have SPD), which has nothing to do with abnormal cognitions or preoccupation with weight and shape. To me, there clearly needs to be a distinct term that does not include these element. The implication that their feeding issues could be psychological in nature just seems ridiculous, given their age.
As for whether or not it is psychological in nature, I learned at SOS is that 90% of children with feeding disturbances have a real organic problem behind their feeding issues. Yes, there is behaviour. And then more behaviour. But they explained that it is because the kids are trying to get out of a task that they are not able to do – whether it is because eating causes them pain (i.e. reflux, food intolerances, etc.) or because they do not have the oral motor or sensory skills required to eat. SOS’s point of view is that the vast majority of problem feeders’ behavioural issues are secondary to the primary cause of the feeding disturbance.
In a 2003 study by Field et al., of 349 kids referred for “behavioural feeding problems”, only 2.6% of the kids didn’t have some sort of a medical issue that interfered with their feeding. And yet, people still think that it is the parents’ fault or that the child is simply too stubborn! And a study by Esparo et al. in 2004 showed that no score for parental psychopathology showed any relation to the child’s feeding problem. The combination of this (and these aren’t the only studies), to me, proves that this is not a disorder that is psychological in nature.
What is missing is education so that people (including referring pediatricians) know this. I fully agree with you that there needs to be a lot more recognition. I also blog about this a bit, to help spread education about the reality of problem feeders. And I decided to become trained in feeding (since I’m already an SLP), as I feel my own experience with my two kids will give me a unique view of what the families I will be working with are going through.
Good luck with your son 🙂 I understand the daily struggles and now just how much energy it zaps out of you. I also wanted to mention this website, in case you’re not familiar with it: https://www.popsicle.org/ They have a mentoring program where they can pair you with another family who has had similar challenges with their child in the past, to provide some support.
As a doctor and childhood feeding specialist dealing with kids with feeding disorders, I am most upset at the lack of education, training and empathy that my clients experience from health care professionals. One client recently told me her pediatrician said that she should “starve out” her son, and that he would be “fine if he ate nothing for up to three weeks.” Aside from not getting that some kids won’t eat, and have many factors, from sensory, PTSD, trauma, can you imagine as a parent letting your child not get any nourishment for three weeks? The tragedy continues when untrained OTs and STs can make matters worse in therapy. If your therapist suggests tactics that have your child sobbing and gagging and vomiting every night at dinner for two years, this is not helping her learn to eat. I’ve spent a lot of time looking at this topic from all angles, which is how we have to treat them. Critical is helping parents tune in to their children, help them heal anxiety and support good eating. I have seen 10 year-old “feeding clinic failures” try three new foods in a month, an 11 year old who would qualify for SED try new foods within months. I feel an intense empathy with parents who are suffering with their children and who are often so poorly served. I write about this in depth in chapter 3 of my book, and chapter 4 is about rehabbing very tricky feeding situations. Love Me, Feed Me:The Adoptive Parent’s Guide to Ending the Worry About Weight, Picky Eating, Power Struggles and More. (Katja Rowell Amazon) I think it’s critical for parents to learn what therapy options are out there (including no official therapy) and to learn to tune in to their children and trust their instincts. Hang in there, and glad you are talking about this topic. parents are so desperate for help! (Even though the book is “for” adoptive parents, it is the same education and support I provide with all my clients.) Please forgive me if I seem to be pitching, but I’m offering this in good faith as another resource, the one I put together after seeing family after family with similar struggles. Good luck.
Thank you so much for your comment :)!
After years of trying different strategies, advice, tactics from anywhere and anyone, the only thing I succeeded in doing was making my son’s anxiety and fear of food worse.
While I am grateful for the support, it is shamefully sad that the most reliable and effective advice to reduce my son’s mealtime stress has come from thousands of “adult picky eaters”. Thousands!!! In my opinion, that should come as a slap in the face that the traditional picky eating advice parents grew up with is not fail safe and fool proof. And the generation to follow is at risk of becoming trapped in a cycle of eating that has potentially devastating consequences in terms of health, self esteem and social interaction.
Thank you for mentioning your book. Unfortunately, it is back ordered here in Canada, something I hope will be soon remedied. I feel you have a great approach that genuinely helps children with many different feeding issues, from mild bouts of pickiness to disordered patterns of eating.
Thank you for “getting it”, and more importantly, for doing something about it. We need more physicians like you. xoxo
that should not be. Please email me and I’ll be sure you get a book. I’ll also contact my distributor. I know they are selling in the UK and amazon.eu Maybe Canada is different. I will mail you one personally if I have to! I also learned a ton working with adult selective eaters. It’s so much fun to work with adults too who can get excited about the discoveries. “Wow, I didn’t realize it was when the food got to the back of my mouth that it triggered the anxiety” (from a patient who was forced to eat and gagged and vomited) or how she figured out that taking smaller bites, felt better, and how, just as with kids, permission to not ever have to eat anything she didn’t want to (without guilt) was the key. I also love my job when a mom emails me and says, “He just dipped toast into chicken soup!” I get what a big deal that is, and then a few months later, “He ate a pork chop, on his own! He thought it was dry, but he ate four or five bites!” LOVE my job!
Thank you!
I am in tears reading this info on selective eating disorder. My son is 22 years old now and I have struggled for nearly 21 years to figure out how to help my son. I was told more times than I can count that he would grow out of it. Our pediatrician used to tell me that a child would eventually eat what he was presented because he won’t starve himself. I tried that once when he was around 4 or 5, but after nearly three days I was the one that broke, not him! I have tried getting him counseling, for both his depression and his ‘eating disorder’, but it doesn’t seem that his ‘eating disorder’ was ever addressed. It’s as if no one ever found it important enough. I’m tired of beating myself up and feeling as if it’s something I did or didn’t do in raising my son. All I have ever wanted is for someone to acknowledge that this is real for him and provide some positive help! Do you have any suggestions that I can provide to him as to where to go from here?
Oh Diana!
I wish I had answers for you. 😦
I just updated the Where To Find page (click on Menu under the logo header). This is where I put articles, resources and studies about food neophobia / selective eating. It’s a short list, but the blog is still relatively new and I’m not finished looking. 🙂
For starters, I would recommend joining one (or both) of the “Others Like You” groups listed. Knowing that you are not alone is a huge relief. I would also suggest you encourage your son to join as well. The members are all “adult picky eaters” or parents like you and I.
At the moment, others with SED are your best source of information.
I wanted to share some of the advice offered in response to your comment on the Mealtime Hostage FaceBook page. I invite you to join us at the table.
“I’m 29, suffer from selective eating and bipolar. Needless to say I worry much less about the eating now but do feel “different and frustrated” at times. All I can say is don’t push the eating, especially if he does suffer from depression because it acts as if it’s just another thing to feel bad about, to set yourself that much further apart. He has made it to 22, he will live a long life even with selective eating, it won’t really harm him. I have a beautiful 4 yr old who is also selective, she is happy and healthy and there are never tears in our house about food, I hope to keep it that way. Don’t let the selective eating bother you anymore, trust your son that he will find food that will sustain and fulfill him.”
“It’s not because of something you did. I have twin boys. Both being exposed to the same food etc. at the same time. He had no incidences or episodes that could have triggered it. After reading comments on this page, I decided to not try to get therapy in a country where there are no known people with enough knowledge about it. I always try to put new stuff on his plate, with always some safe food. His brother is a normal eater and would try almost anything. Sometimes he would pick it up, smell it and put it against his tongue. He doesn’t really eat new food, but I just try to make him feel comfortable around food and not feel out of place in social situations.”
“My son is 10 and I can totally understand this post. Had nearly exactly the same experience with advice given and yep, he just didn’t eat at all. I cried when I found this Facebook page and FINALLY feel like there is hope….and find amazing comfort in knowing others are there supporting and understanding this condition.”
Diana–Sounds to me that your son has the same thing I have. Quit worring about his eating problem, leave hin alone. My Mom finally did that to me and yes I’m still the same way and I hate to tell you but I’m eighty years old now and I’m just fine. Dr’s don’t know how to deal with this problem and they just don’t understand why we are this way. But we are!
Bethel, your words mean more than you can know. 🙂
Diana,
I feel I could have signed your comment with my own name.
This is so painful for the parent and the “child”. Mine is now 15 and I don’t know where to turn to help him.
My 4 year old clearly has SED although no doctor has diagnosed him. I gave up on my doctors who provided me with no information and ridiculous procedures plus an operation. We can’t find help in our area. We went to a specialist and they couldn’t provide us with any options where my husband and I didn’t have to give up out jobs to meet their schedule. How can we treat my son?
i am a teenager with what is most likely a milder form of SED, but for me, I dont have any other disorders. My parents have been extremely understanding, and my mom actually found this article for me. I can’t eat meat or certain textures, nor cooked vegetables. Luckily, my parents prepare the food that i feel comfortable with for me, while they and my brother are foodies. Now, with whole grains, and careful planning, my diet is even healthier than that of a lot of regular teenagers. As a soccer player, I get a ton of exercise, and none of my friends question my eating habits. I feel like simply being allowed to eat whatever I feel comfortable with at home has helped me significantly, and I can now try some foods with similar textures and flavors to my “usual.”
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One question. Bad reaction to some food could be considered part of this disorder? I’m an adult but I haven’t banned some kind of food. Sometimes I even try something that I don’t like, specially in social situations. I can easily surpass the taste and I even like the taste of some of these food, but suddenly I feel the urge to puke, which I can control if I stop eating.
And the strange thing, is that some of this foods just make me feel bad in the way they are presented, raw and in pieces, like tomatoes.
Those with SED often have a strong aversion to most foods.
There is a significant amount of distress caused by the expectation to eat unfamiliar food (food neophobia). This can result in either a lack of interest in eating; avoiding food based on its sensory qualities; or avoiding food that has previously caused negative reactions (gagging, vomiting, choking).
Sorry… me again… I just have to add that from my training, the sensory aversion would be the primary cause and the food neophobia would have developed secondary to the inability to tolerate the sensory elements of the food. You are likely hypersensitive to tastes and probably also to textures. My children’s OTs explained to me that each presentation of a food is different, since the way a food is presented changes it’s sensory properties. For example, cooked tomatoes are much less “explosive” in the mouth when you eat them than cooked tomatoes. So they’d be harder to manage sensory-wise. I’d recommend you see an OT or SLP trained in sensory feeding disorders for some help.
Thank you for comments, professional perspective and advice.
I’m just a mom. I run a daycare. I see lots of different temperaments in kids and a variety of eating behaviours. This is my only experience to recognize that there is definitely something different and abnormal with how my son perceives food.
It’s very distressing to have that mom gut instinct and not be able to get professionals with the proper training to help us.
We did succeed in baffling the OT we saw a few months ago. She called my son “an enigma”.I am fortunate that she has done some independent digging and I will meet with her again soon to discuss strategies that might be helpful.
You have a very unique insight as a parent intimately familiar with SPD and being a trained SLP. I found your blog and will poke around a little more. Thank you.
No one is ever just a mom 😉
I’m most certain you are right that your son’s eating is beyond picky. I was at a conference once when they told us that, 90% of the them, when a parent has a concern about their child, they are right. They’re not necessarily right about what exactly is wrong, but they are right that something is wrong.
I understand much more the stress that comes from having children with special needs and not getting the help you need for them. And I say that being someone who is trained in a related field and whose children have been receiving weekly therapy for 6+ months. I can only imagine the stress you have lived for the past 7 years.
Unfortunately, I think that problem feeding is still an area that is not well understood and where parents or the child themselves are too often blamed. I went to my SOS training both to help my own children and to be able to share that knowledge with parents. I think your blog is also a wonderful resource for this 🙂
Thank you so much! 🙂
I only heard of SED a year ago but I have lived with it all of my life. I never found it easy trying new foods and I still can’t try new foods. There isn’t many meals that I can eat so I don’t have a varied diet. Not one of my friends understand it and they ridicule me for being attention seeking saying that I’m just a picky eater. PIcky eating is a phase which I have never outgrown. I think specialists need to find a simple treatment soon because more and more people are realising they have it and not knowing what to do. The diseases you can get from this are fatal.
Thank you for comment. As a parent of a child with SED, I find it somewhat comforting speaking with many adults who have few if any health concerns because of their limited diets, however there are also several who blame obesity, diabetes and diverticulitis (to name a few) on a lifetime of nutrient poor eating.
The future health of my son is always on my mind, knowing he is underweight and having that fact ignored by our family physician (who told us for years he was growing normally).
More awareness of this eating disorder is certainly needed.
I too have been suffering from this “disorder” all my life and not knowing what it was. Had everyone make fun of me and ridicule me as well. Im not so severe that if something i dont like touches something i wont eat it, but as soon as i bite down on something i dont like i gag and eventually throw up. The unfortunate part in all this is that you do have medical issues and get severely sick because you are missing out on vital nutrients. And now im pregnant and having a really hard time getting what nutrients my baby needs. It saddens me to think that my child may be suffering and I have tried to get down what I can but am unable to do so. Which then subsequently makes me upset and stressed which is also harmful for the baby. Its just a hard situation for people like myself to be in when no one understands.
alecia Don’t worry too much about your baby not getting the right food from you. In my twenties I had two sons and they were born perfect. I too have an eating disorder and I have been this way since I was 5 or 6 years old. Quite a few years back I saw something on the computer that described my illness-it wasn.t picky eater . They are finding out the kids that are young also has this. I saved the paper but my son threw some of my papers away and he threw that one away. I’m on the computer seeing if I can find it again and that when I came across your letter. I also know of someone who has a grand daughter just like me. In the paper I had it was something to do with over powering taste buds and therefore we taste some food very tart or something like that, I hope I can find it some day.I wish you the best for you and the baby. Oh by the was at that time I couldn’t swallow pills and didn’t drink cokes just ate what I could. Bethel
I do wonder if Stan thinks those of us living with this daily really ENJOY having to watch our kids live this way. Because I obviously LIKE to give ammo to my bitch of a sis-in-law, and it’s so FUN to watch my kid hold his nose as we walk down the pizza/mac&cheese buffet @ his friend’s birthday party just to find a seat so we can break out the crackers & applesauce. Of course, I’m kind of the proudest mom in the room because I CHOOSE to see the fact he’s the only kid not slamming down soda or Hi-C FruitCrap; he’s rather nibble on a few animal crackers than shovel icing & cake down his throat. And when we attend a function & he’s offered food not in his ‘range’, he responds with a simple ‘No thank you’ instead of the cries of ‘YUK!!’ I hear from some of his friends when asked if they’d like to try one of his Snapea Crisps.
I truly wish I could meet Stan in person because I would be able to give him the big ‘Eff U’ he deserves.
The fact that doctors and other trained, licensed medical specialist spent years reviewing all available medical evidence (typically based on material that has been published in peer-reviewed medical/scientific journals) in order to update the DSM which is used to OFFICIALLY diagnose patients did NOT include Selective Eating Disorder certainly suggests that it is not in fact a disease/illness.
I disagree. Peer reviewed medical studies that sought to distinguish picky eating from food neophobia were not published until the early to mid 90s. These studies concluded that picky eating and food neophobia are distinctly different concepts.
The DSM-IV was released in 1994. The medical community could not possibly have examined ALL the data available on Selective Eating Disorder at that time. There wasn’t any.
The Duke Study, which began in 2010, (a decade after text revisions to the DSM-IV to create the current edition known as DSM-IVtr) is still in progress. It is the largest international study of “picky” eating in adults and children. This study is one of several conducting research on SED, or “Avoidant / Restrictive Food Intake Disorder” as it will be known in the DSM-V, which is expected to be released in May 2013.
I guess anorexia didn’t exist before it was entered into the DSM? Homosexuality used to have its own entry. The manual is revised now and then for a reason. The world changes, studies are performed, data are updated, and criteria change.
Preach it, Annie! Someone reads this one post and rather doing his own actual research on the topic (here’s a clue: Try entering “Duke University” when you Google SED) makes a know-it-all, uninformed comment. Quite frustrating for those of us seeking help for our children.
Until you’ve held my child while walking in my shoes, take a moment to think before you type and get informed.
http://www.mamasagainstdrama.com/2012/11/my-daughter-doesnt-eat/#more-3947
I am a practicing Mental Health Counselor that believes there are real disorders that should be included/added to the DSM V. Unfortunately, all of us in the mental health field do not get to have a say in what is included and what is not. It’s decided by a specifically-selected committee.
Thanks for your comment. I understand the APA (via the DSM-V workgroup) is currently conducting field trials to evaluate the proposed additions. A recent article (January 2013) states Avoidant / Restrictive Food Intake Disorder showed “good agreement” between clinicians, suggesting that it will be included in the revised diagnostic manual.
Still, there is a big difference between a “picky” eater and a “selective” eater, a distinction that researchers frequently recognize in medically peer reviewed studies, but doctors ignore when parents are desperate for help. It’s not my intention to diagnose anyone, just to raise awareness.