When Celiac Disease Leads to Fear of Food

celiac and the fear of eating

About 20 years ago, when I was living in New York City as a struggling (doesn’t even begin to describe it) artist, I ate a chicken salad sandwich at a nearby diner. Tasted…ok. About 5 hours later, it hit me. Boy…did it hit me. Food poisoning like I’ve never experienced before or since. The best part? I had to bartend an 8 hour shift that night. Let’s just say I took a lot of potty breaks.

I have not touched chicken salad since that day. Is that rational? I don’t care. I’ve been scarred for life by one sandwich.

I got an email from a mom who is dealing with similar issues with her 13-year-old son. After dealing with undiagnosed celiac disease for so long…well, I’ll let the mom explain.

Hi Gluten Dude. I’ve been an avid follower of you for the last year or so since my 13 year old was diagnosed with Celiac. It has been a long haul for him so far. He was sick for many years, nauseated ALL the time. Constipated and huge white mouth sores. Since his symptoms were not “classic” it took a while for diagnosis and took a lot of pushing from mom (me) to get him tested.

One thing I haven’t seen too many people write about that has been a big challenge for him. After so many years of feeling sick, he has developed SO many food aversions. This is from years of eating something and feeling sick afterwards. Years ago, I ate a bunch of dried cranberries and got the stomach flu that night and have never been able to touch them since. My son sadly has this aversion with probably 70% of foods.

I talked to a man who I met in the GF section at my grocery store who said that his wife has celiac, is 70 years old now and can’t gain weight; not because she can’t find enough GF foods, but because her food aversions are so strong.

I can find millions of GF recipes on the internet that look great, but my son would honestly rather chop off his own arm than eat something with a tomato…or an olive.

So what’s the answer? Has anyone gotten help? Do I send him to a therapist who works with eating disorders? With anorexics? Because this food aversion thing is truly an eating disorder. And as his mom, I just am unsure how to help. He is too thin. He is not growing well. We are deeply concerned as we see his teenage friends shoot up in height. So do we just focus on getting him calories and plying him with the things he likes? Or do we work on reintroducing foods he is disgusted by (most foods). And how would we even DO that?

Anyway, I’m just wondering if you’ve ever written or thought about the associated food aversion/eating disorder that comes with Celiac. Let me know if you have any advice. And thank you again for all you do and for being a lifeline for celiac families.

So sorry to hear about your son’s struggles. Celiac disease affects us in so many ways. Here I am 8 years later after diagnosis and running this blog for 5 years, and I’m still learning new things that my fellow celiacs deal with.

While I am certainly not qualified to give advice on this kind of topic, my gut is saying you answered the question yourself.

Do you send him to a therapist? Yes, I would.
Do we focus on getting him calories? It would seem to make sense.
Do we reintroduce foods he is disgusted by? If you can.

Has anybody in the celiac community dealt with a food aversion before and if so, can you offer up some guidance?

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40 thoughts on “When Celiac Disease Leads to Fear of Food”

  1. I am man so sorry to hear your son has to go through this. Celiac sucks!! I don’t have any great answers but have had some issues with this myself. When I get glutened I get very ill and vomit for several hours. So needless to say it is quite an event. After an episode I get very nervous to eat anything and will go for a few days without eating and become a bit irrational and start thinking not eating is the best alternative. But ultimately hunger wins over and I very slowly start to add foods back in starting with my ultra safe items for several weeks. Usually after several weeks I build up confidence again but cannot say I ever feel confident eating outside my bubble. I wonder if a nutrionist who specializes in celiac could offer some advice that would give him some confidence? Good luck. Tell him he is not alone!

  2. Hi! To the lady in the post: Sorry to hear about your son’s struggles. You are a good Mom and you care so much!
    I have celiac disease and have multiple allergies as well…everytime I eat there is a level of concern. People (who called themselves my friends) assumed that i had an eating disorder but turned out i had 3 ulcers and allergies to eggs and soy and dairy…the list goes on and on.
    Has this boy been tested for other food allergies? Maybe his body is rejecting foods as a way to protect himself. Or maybe his stomach was affected and he knows that certain foods burn. If it were my son, i would make sure to test for stomach ulcers and other allergies before concluding that it must be an eating disorder….but i am no doctor. I
    And if the tests come back normal, I would let him eat what he wants until the panic subsides. It will take time, but everything has to heal after the sickness trauma….even the mind.

  3. Guess I am lucky to have been 58 when I figured it out. Poor kid, I struggle with eating any thing new, so scared I will get sick. I have my safe foods, ones I know won’t make me sick, mainly whole foods and only what I cook. The only foods I try HAS to have the Certified Gluten Free symbol on them. Hopefully your son has enough safe foods to trust, as he heals. I haven’t ever gotten as sick as I was, there are little symptoms that usually let me know if I am getting glutened, if I pay attention to my body. Truthfully, I would rather not eat than to get sick, I feel so sorry for this young man.

  4. I might say involving him in the cooking process might help. I wasn’t diagnosed until an adult but I am sooo wary of foods I don’t make myself, but seeing and handling the ingredients personally really seems to help. I don’t know for a teen boy, but I struggled similarly as a teen girl. Therapy can really help and structured reintroduction. Once I became asymptotic for a long enough period, I trusted my body to add in new foods again. Wishing you the best!

  5. I am so sorry to read you and your son are going through this. My son was diagnosed early (at 6), but for him it gave him something else to hyper fixate about. He was diagnosed later with Aspergers. Even now, 7 years later, he will still ask at every meal if we are sure certain foods are gluten free. I’ve never seen a child so vigilant about their diet (and I’m a mom to 5 with 2 grandchildren).
    If it were my son, I would approach it from multiple angles would get the highest quality calories you can get in him of the foods he will eat. Then, get him involved in the search for new foods, both at the store, and online he would be willing to try. Next get him involved in the cooking process. At that point, if still concerned about an eating disorder, I would perfume it.

    1. This sounds so much like my son. I have celiac, but as far as we know, he does not. But he has terrible food aversions. He is 12 and still eats like a toddler. Chicken nuggets and cheese sticks. When he was younger, the idea of trying a new food would make him panic. Doctors said he was just being a stubborn, picky eater, but I knew it was not that. It genuinely upset him. It’s so sad. He is thin and just does not enjoy eating. We did food therapy for him when he was 9. It helped a little but was expensive and an extremely slow process. I have read quite a bit about it. Food aversions are very common with boys. It is an eating disorder but not associated with body image. For many boys, the texture of the food also has a lot to do with it. Also, Most boys with this problem have a heightened sense of smell, which makes their food taste much stronger. We try to give my son high calorie foods and protein shakes. We try to get him involved in cooking, but with a busy lifestyle, that’s not always easy. It is a constant battle. I wish I had some answers. I hate nagging with him all the time over what he eats.

  6. We are dealing with exactly the same thing with my son, who is 7 and was diagnosed at age 2. Just the mention of trying a new food can cause him to burst into tears, run and hide. It has been steadily getting worse for the past couple of years. It’s clear that he can’t control the emotional – and sometime physical – reactions, and it’s heartbreaking. We’re desperate to give him the tools he needs so he’s not so afraid and anxious of new foods.

    We’ve tried so many different angles. Being strict about having to try one new food a week. Being easy-going and letting him only eat the 5 things he likes. Bribing with a new lego set. Bribing with screen time. Verbal encouragement. Commiseration. We just keep trying, and have had some success – on the protein side we’ve introduced steak, ribs and pulled chicken in the last year (all hard-won, but won!). And he did eat a bite of tomato last week and didn’t freak out, and last month he tried a square of mozzarella cheese. He tried shrimp last week and declared it disgusting, but we’ll try again. Being consistent and not making it “a thing” seems to help. But it’s slow going, and we’re not confident we’re doing it the best way, so we are considering finding a therapist. He’s run away and hid during cake time at two birthday parties this year – and one of them was his brother’s party and the cake was safely made at home by us – so there’s a lot going on in that little head of his. He’s also very small and very self-conscious about it.

    1. Ditto what the others have said about involving him in the cooking process. We’ve seen some success there, namely with high-calorie pork meatballs. He had been refusing to eat them, but then managed to eat two after helping cook them one night. Of course the next time I cooked them he refused to eat them again… (sigh!) but then on my next attempt he scarfed down a bowl of them.

  7. I don’t know if there’s a perfect answer out there. My daughter was diagnosed with celiac (atypical symptoms like her son so took awhile as well.) What’s helping us overcome her food aversions has been introducing her to gardening. First, we visited a place that allowed her to pick and eat something off the vine. It was adventurous and weird to her so she was game to try. She liked it though still didn’t like produce from the grocery store. We then decided to grow our own garden. It’s referred to as HER garden. She grows, picks, etc. It’s helped. Now, I’m going to start working on incorporating her into cooking routines. The goal is to see if we can get her over other food issues by having her make the food from scratch. Fingers crossed!

  8. Holy cats! This is me also!! My husband thinks I’ve developed an eating disorder since my Celiac diagnosis 3 years ago because I hate food now. If I could consume all meals in the form of a protein shake I absolutely would. Eating has become a task like doing the dishes or cleaning litter boxes…it has to be done, but I don’t want to. =/ I feel so badly for your son. One thing I’ve found to help me a little bit is to make smoothies out of protein powder, peanut butter, cocoa nibs, almond milk, and a frozen banana. It tastes like a dessert and fulfills my “eating quota”. 🙂

    1. I can totally relate to that. DX last summer at 58, been gluten free for 6 months, but glutened myself so bad at end of January I basically am starting over (not to self: don’t shop when severely brain fogged). I used to be a foody and now I find preparing and eating meals a chore. I also have certain foods that I have figured out over the years I just can’t eat even though I didn’t know why at the time. When I get up and my gut doesn’t hurt I don’t want to eat because I know the pain will come a couple of hours later. I’ve commented to friends that I wish they’d come up with that magic pill that would substitute for a meal. And I’m an adult (mostly) so must be so difficult for the young kids. Childhood should be carefree and fun. Hard to do for young Celiacs.

      On a positive note I found Greens double dark beer and GF flour worked well as substitutes in my Irish Beef Stew with Guinness recipe last weekend. The 12 year old Red Breast Irish Whiskey made an awesome after dinner indulgence. I have also found a completely GF bakery, Pushkin’s in Sacramento, and had a chocolate chip cookie that didn’t come out of a box. Yums!

      Just reread my comment and realized I wrote “I used to be a foody”. CD can really suck the joy out of eating. I still love food, but it’s so much more complicated now. I am so thankful for the support of this site and others.

  9. Oh I totally relate. I had celiac and multiple food allergies for much of my life without realizing, so I have a lot of aversions that came out of that period.

    Some have mellowed out of sheer necessity–it’s hard enough for a GF vegetarian who’s allergic to A-1 Casein and very sensitive to eggs to find something to eat when traveling! But take out all of the things I have an aversion to, and it’s impossible. So when I travel, I breathe deeply and order the only thing I can eat on the menu. My husband usually gives the server the gluten lecture. Then I take 4 double strength Glutenease. I know it’s not a magic pill. I know it’s only digestive enzymes. And I never ever ever eat gluten or take unnecessary chances. But it seems to give me some psychological buffer and comfort when I do have to eat outside of the home.

    The other thing that helped me was branching out and trying new things. I had a pretty varied diet before going GF, but now I try all sorts of things I never had before, and it helps, since there are so many of the “old foods” that I’m averse to, even if I can technically eat them. Jackfruit is yummy! Who knew? I really like buckwheat and buckwheat noodles (King Soba brand is 100% gluten free)…go figure. And those tiny baby beluga lentils are delicious with coconut curry Indian summer sauce over basmati rice. I may have closed a lot of other food-related doors, but I keep trying to open up new ones, as long as I know they are gluten free. And I agree. When I can’t face anything else, a smoothie can be a great way to get fresh fruit, protein, and calories in.

    I also had the chicken salad experience as a child, except for me it was cooked carrots. My mom made me eat them, and then I threw up all over the carpet! Probably just a stomach virus or something, but to this day, I can’t eat cooked carrots. Bleech. So some aversions may always be there. Que sera. There are enough other foods out there that the world isn’t going to end if I never eat a cooked carrot! 🙂

    Good luck. I totally empathize, both as a celiac/GF individual and as a mother. My daughter is not celiac, but from age 9-13 she had copper toxicity and couldn’t eat anything with a high copper content, which pretty much included all of her favorite foods: chocolate (!), avocado, nuts, mushrooms and much more. It was so hard to get any nutrition in her, as she hated everything that she was allowed and encouraged to eat. And she’s a stubborn and feisty one, to this day! So my best trick was steaming vegetables, then pureeing them until they were unrecognizable and incorporating them into a tomato-based pasta sauce so she couldn’t tell they were there. She pretty much lived on pasta for those years, but I made it as healthy as I could, without her knowledge!

    Big hugs,

    1. Wow, someone else with copper toxicity! I’ve found that I can eat high-copper foods as long as they’re balanced with a good zinc source. Many of the foods you mention I can eat with a piece of meat like chicken, turkey, or beef. I can even occasionally snack on a Larabar. Peanut butter is actually a pretty safe bet and the only nut (although peanuts are technically legumes) butter I eat now. I’ve also found already-shelled pumpkin seeds at the store. Almonds, peanuts, and pecans are relatively low in copper compared to other similar foods. Pine nuts seem to be comparable to pumpkin seeds. I’m considering trying hemp seeds as well, but it’s hard to find reliable information on their complete nutrition profile. Having to deal with this balancing act when preparing meals, and also having to worry about intake of the fat-soluble vitamins after giving up my supplement regimen (became too much for my body), in addition to my wheat allergy make eating and food preparation challenging and frustrating. I’ve also wanted to give up and live on nutrition shakes. The Ensure and Equate brand (Wal-Mart) shakes are very tasty to me. I’m not really food-averse. I’m just frustrated with how complicated eating has become. I certainly wish we didn’t have to eat to live, or I would just not bother. Long gone are the days when I could just go out and get, or even fix and prepare at home, whatever I wanted.

  10. Poor kid! I remember being very afraid of food after my diagnosis too( I was 25). One thing to remember is he is 13, they already don’t have advances palates so adding that to his fears probably makes things super limiting. One thing that helped was definiteley talking to someone. Be it a therapist or a well trained dietician/nutritionist venting and mourning the loss of his favorites and talking through his new fears will help a lot. A dietician could also give him a plan to safely see if a food really bugs him. Things like tomatoes are FODMAP foods and could be an irritant. Then I would take and afternoon and go to the store together and look at all the awesome naturally g-free foods there are. For me, I started watching cooking shows, like America’s test kitchen, and just got the bug to experiment and make food again. It took time I eventuallu got over my fears by becoming more knowledgable about food and how to make it myself. I hope things get better for him!

  11. We are currently camping in WDW and while Disney claims that gluten free food items are available in most restaurants, I am so afraid of cross contamination that I won’t eat anything except what I prepare in our trailer. It’s kind of been torture, but not worth taking a chance and ruining our vacation. Husband has enjoyed some great dishes, and I look on with envy, but again, not worth possibly getting sick. Guess this is a “restaurant” aversion. Haven’t eaten out since December 2014; date of official diagnosis.

    1. Oh so sorry. I totally understand. I was afraid to eat out for years. But just to put my 2c worth in, Disneyworld is the one place I do feel safe. I did a ton of research, read all of the DW allergy blogs, and spoke personally to every chef. I’ve been there twice in the last 2 years and they were the only trips in the last 5 years where I did not get glutened or sick in any way. I don’t eat at any counter service locations–the only things I’ll get there are pre-packaged items from gf brands I trust. But almost every sit-down restaurant was very accommodating and knowledgeable. The only ones that I found multiple warnings against online were the eateries in the France Pavillion, so I avoid them. The following places were very helpful and made delicious off-menu (I have multiple allergies/intolerances) dishes for me: O’hana, San Angel Inn, Cinderella Castle, California Grille. Just tell them you’re Celiac and ask for the chef. I’ve also heard good things about Jiko, The Cooking Place, but have not made it over there yet. Whether or not you feel comfortable enough to try out any restaurants, I hope you have a great time there!! 🙂

    2. I use the Find Me Gluten Free app and only eat at places where 100% of the votes declare a location Celiac Friendly. Have had great luck that way with no cross-contamination. Disney has several places with 100% votes. I have eaten in them and not gotten sick and I react violently to gluten.

  12. Betsy in Michigan

    I agree with what people are saying about being involved in the cooking process. I’ve heard it works for kids, and it certainly has for mine. Ones who want to have all their food separated on their plate, but if they helped make it, they’d eat a goulash thing. The cooking shows might be a winner, too (maybe you could search for any episodes that are gluten free recipes? Even if not, REAL food recipes are sometimes easy enough to sub in GF noodles, or breadcrumbs, or rice, or whatever.). Good luck.

  13. I feel for the son – as I am the same way. I was diagnosed at age 20 and now at 34, I have the eating habits of a 3 year old (and that’s being generous!). While I can imagine it is frustrating, if he is getting all the necessary nutrients, then it’s probably not a problem. I find ways to eat (or drink) my nutrients. For example, I won’t touch a berry with a 20 foot pole but I will happily drink a smoothie with those same berries (ditto for kale). But otherwise I usually eat the same foods every single day. Most people find it boring, but it’s what I’m comfortable with and I’m healthy enough.

    I’m doubtful that therapy would work as I think that’s just how we picky eaters are built. But I’d be curious to hear if the mom does take her son, if it does work. But I’d say, just load him up with foods he’ll eat. And if he gets sick of them, then he’ll have no choice but to try something new 🙂

  14. I used to have an aversion to ginger ale because I drank so much of it in an effort to settle my stomach (pre-diagnosis). I’ve gotten past that, but now I regularly have nightmares about accidentally eating non GF bread.

  15. What a tough situation. I know we’ve probably all been there in some way or another with this disease. A few things to think about:
    1. There is a lot of cross reactivity when it comes to gluten, even with so-called GF foods. GF grains (rice, etc.), for example, can be very tricky, especially early in the process of healing the gut. Ditto with milk and eggs for a number of folks. So, just because something is gluten free doesn’t mean it may not be on his “cross reactivity” list.
    2. If you force him to try something (or bribe, or whatever) and he gets sick, he may not trust you again with food suggestions/introductions. And, he may get sick simply because of his anxiety. So, tread carefully as you negotiate with him on the introduction of “new” foods.
    3. You need to figure out a way to get his “buy in” on food selection and preparation. Try to stay away from boxes and bags of GF stuff and choose/offer organic whole foods whenever you can. If you can get him in the kitchen helping create his meals, it can really help.
    4. Nearly all pre-teens and teens try to establish areas in their lives they can control, and food, even for non-celiac folk, is a huge area of contention/control. So, #2 above, especially with a 13-year old boy who may have socially embarrassing “incidents” if a food choice goes south.
    5. Have patience, try to help him understand balanced nutrition and what kinds of foods he needs to get his system healthy and strong. Once he is able to make some positive food additions without feeling ill, it will get easier to broaden his food horizons. 👍🍏🍇

  16. I was sadly routed to a teen eating disorder specialist when I was depressed because of food related bullying at a big Silicon Valley company I worked for where food was provided 24/7. It turned out to be awesome because she was just a great therapist who also knew a lot about the role of food in group dynamics and feelings of isolation. Her help along with MBSR/CBT classes really made a huge difference and got me back from a desperate and dark place. She’s at PAMF Palo Alto, for anyone in the area.

    I wasn’t just afraid of foods – I was afraid to let people see me eat because they would always get on this rant about how unfair it was for me or play 20 questions about my symptoms. What works for me now is to say, “I’m perfectly happy to enjoy your company, and if you want to feel bad, that’s ok. I’ll be over here feeling good to see you. You can join me whenever you want.” It kinda gives them an out I can live with while putting my foot down, and they don’t go on a mission to find out about what happens when I eat blah blah blah. No more gluten lectures to entertain diners!

  17. I was sadly routed to a teen eating disorder specialist when I was depressed because of food related bullying at a big Silicon Valley company I worked for where food was provided 24/7. I was miserable with trying to work two jobs at the company while taking care of myself and getting great reviews.

    The jerk who sent me to her aside, it turned out to be awesome because she was just a great therapist who also knew a lot about the role of food in group dynamics and feelings of isolation. Her help along with MBSR/CBT classes really made a huge difference and got me back from a desperate and dark place. She’s at PAMF Palo Alto, for anyone in the area.

    I wasn’t just afraid of foods – I was afraid to let people see me eat because they would always get on this rant about how unfair it was for me or play 20 questions about my symptoms. What works for me now is to say, “I’m perfectly happy to enjoy your company, and if you want to feel bad, that’s ok. I’ll be over here feeling good to see you. You can join me whenever you want.” It kinda gives them an out I can live with while putting my foot down, and they don’t go on a mission to find out about what happens when I eat blah blah blah. No more gluten lectures to entertain diners!

  18. In 16 years of parenting, 3 and a half with a celiac child, all I can say is the harder you push, the worse it will get. Let him eat what he likes and let him see you enjoying healthy, nutritious gluten free food. I wish you the best of luck! Celiac disease is tough.

  19. Dear The Mom,
    I am so sorry you all are going through this. Coeliac life is sometimes hard to navigate, just like other parts of life. But you are there for your son, and that by itself is amazing! Keep up the good work.

    Food averson is a tricky subject, because it’s so personal. Yet everybody got at least one cranberry/chicken salad/seafood/ice cream whatever story that makes us all relate somehow.

    For me, food averson coloured all my teenage years before I got diagnosed. I displayed behavior periodically similair to orthorexia and/or anorexia, but my mission wasn’t to get thin, but to feel less sick. Did I get over it? Most of the time, but when I get glutenized, otherwise ill or stressed out of my mind I tend to avoid all foods until I realize what I am doing. Then I have my own personal set of comfort foods that reminds me that life can be good.

    Here’s my two cents:

    If he’s getting enough calories and nutrients as it is, leave it for a while. Don’t push, don’t stress it. Let him learn that food isn’t always out to get him, and let him and yourself just enjoy life for once. From what you are writing he’s been sick for ages and now he’s a teenager and will hopefully live happily and well for the rest of his life. Someone here mentioned all the “funny” ingredients that are out there, that (almost) only the GF part of the population dares to try. If you have the time and means be playful and involve him in the cooking/getting ingredients process. Ask him to note and tell you, if and when a certain food makes him feel well. And continue to build on that momentum. Food isn’t always “evil”.

    Talk to him. Let him have all his rants and the whys and the yucks for every single ingridient you are worried about. Listen. Be there. Ask for the whys, but don’t push him into trying something new. Let him know that you truly understand his reaction, but also be honest about why you are worried (if you have not done this already). This is about trust. Trusting that he can eat without getting sick. Trusting that the grown-ups in his life got his back. If you find a good therapist, they can probably help too, but the most important work lies within the family 🙂

    Watch out for other allergies/food intolerances that are quite common among us folks. Some intolerances will most likely sort themselves out over time, since he got diagnosed early. And that’s good news!

    You got this. Even though it’s hard and difficult, and you don’t know what to do. You’re one of the coolest moms ever, because you reached out to Glutendude.

    So there.

  20. My daughter is 7 and she’s already showing signs of a food disorder. It’s so sad. The doctors think she subconsciously remembers the pain she was in (she’s been diagnosed for 3 years this May) and so she won’t touch anything that she does not eat regularly – which means she will not touch meat. Don’t even try giving her new food. People tell me all the time “well you’re the mom” or “you should make her eat that!” They don’t understand the pressure food puts on her so I don’t fight her on food. If her lunch ends up being a bag of cheetos, she will survive until a meal or a healthy snack. I am so scared of causing a full on food disorder that I just let it be – while trying hard not to punch these people who think they know what is best for MY child. This disorder has so many issues besides just finding food, especially in kids….

    1. I should clarify – my daughter won’t eat meat, veggies (except carrots) and basically lives on dairy. BUT she is super tall and is growing so there are no concerns. She does go to a specialized Celiac dr at the children’s hospital and is monitored so we are lucky to have that resource, but I do wish I had help with the food thing. It’s heartbreaking as a mom – and for her.

  21. A couple practical ideas:

    Get red, yellow, and green stickers to have him put on foods in the pantry. Even younger kids can do this, and it helps to establish what makes green a go, that there are middle zones that can be researched, and absolute no-gos.

    Another is having him cook for himself with you. Less mystery, more control… And, maybe empowerment?

    One thing I’ve seen with ASD aversions and picky eating that worked well was getting scientific. Make a chart where a new food is on each row. In each column, put the date it was tried. Then, track in the same cell how he felt after eating it and the next day with a 1 to 10 scale or smiley faces. Things that are documented to have one bad day… Maybe it was a false positive. Things that have three bad days need more data or caution. Things with four or five bad days get on a no-gos list.

  22. I’m so sorry to hear that! You mentioned that your son won’t eat anything with tomatoes. Has his GI tested him for fructose intolerance (tomatoes are high in fructose)? What about lactose intolerance? After I was diagnosed with celiac disease and went GF, I actually began to feel worse. I was later diagnosed with fructose and lactose intolerance. As soon as I started a low fructose and lactose diet, I began to feel much better! Best of luck to him!

  23. Kate Alexander

    I am so sorry to hear your son and your family are dealing with this. But also very glad you reached out about it. I would absolutely recommend getting him professional help, specifically working with a team of pros to address his severe food aversion. I struggled with a different from of food aversion when I was undiagnosed. I would not eat anything at all for days if there was anything remotely important that I had to do that day or the day after. This led to me often eating only a few days each week or starving myself for days at a time for fear I would get sick. I wish I had known then about the treatment options available for food aversion and other eating disorders. I am a grad student in nutrition and have spent a good deal of time studying about eating disorders. From both my personal and educational perspective,I would offer this advice: when you seek help for him (and you 10000% should) make sure he is treated by a team of professionals that include a therapist, a nutritionist and a medical doctor. Eating disorders are not so simple as changing the mind’s association with the foods. A nutritionist (or dietician)needs to help him meet his needs with foods he will eat, or work with him to develop eating plans that are healthy and he needs a medical doctor who can work him them to make sure he doesn’t end up with serious health complications from his aversion. I wish you both the best! He can beat this!

  24. I’m so sorry to hear about your son’s troubles. I’m a dietitian who specializes in celiac disease (I’m a celiac too). Here are my thoughts on your issue.

    Reintroducing aversion foods can take years. The associations we form when we’re nauseous and vomiting are very very strong (as you know with cranberries and the Dude knows with chicken salad). Because you’re concerned about your son being too thin and not growing well, the most important foods to reintroduce first are the most nutrient-dense foods. I’ve included some general knowledge about one reintroduction method at the end of this comment.

    First, a few things to keep in mind. Tastes change about every 7 years. So foods that he really hates now, he may be more open to in the future simply because his tastebuds evolve. What’s really important is to make sure that he’s getting the nutrients he needs as a growing boy. I recommend finding a good dietitian that can analyze his current diet and identify possible nutrient deficiencies. She can then recommend foods that he may like to make sure he’s getting proper nutrition or recommend a good vitamin/mineral supplement if he’s simply not ready to try enough foods to meet his needs.

    It’s very important to determine if your son has additional food intolerances and this should be your first step. Additional food intolerances are very common in celiacs, especially ones who spent many years undiagnosed as children. If your son still has symptoms (even if they’re much improved), he may be avoiding a large number of foods because he has an intolerance to a few common foods or ingredients. Some of the common offenders (like dairy/lactose/casein and fructose) can be tested for by a doctor. You may want to find a medical doctor in your area that can do these tests. A good dietitian can also help identify additional foods to which he may be intolerant.

    If your son doesn’t have additional food intolerances, then you may want to find a therapist in your area who is trained in food reintroduction. This is different than an eating disorder clinic. Most eating disorder clinics focus on anorexia and bulimia – and they aren’t trained in helping people who have food aversions due to the prolonged nausea and vomiting that often accompany undiagnosed celiac. Many of them focus on overcoming a mindset and fear that eating certain foods will cause weight gain. If your son doesn’t have this mindset, then their approach may not be very helpful for him. Therapists who focus on food reintroduction can help children who are averse to eating foods for a wide variety of reasons.

    This is what one method of food reintroduction looks like for someone who doesn’t even like being around a specific food : 1) Smell can be a powerful trigger. First, we get the food-averse person used to smelling the food and seeing it on other people’s plates. Tomatoes don’t have much of a smell but if he’s averse to a nutrient-dense food that has a strong smell, that may be a good place to start. Don’t push the food. The idea is for the person to become comfortable around it without any pressure to eat it. Once someone can do that, move on to step 2.

    2) Serve a plate of food with a lot of things he likes and then the averse food as well. Don’t push or even encourage him to eat the averse food. He doesn’t have to eat it – it’s enough for him to simply tolerate it on his plate while he eats and enjoys the food around it.

    3) Have him help you cook a meal or prepare a dish with the averse food. He should handle the food, but he doesn’t have to eat it yet. This should be a fun activity with no pressure. The averse food should be an ingredient but not the main focus of whatever meal you choose to prepare. (Starting with a stuffed tomato dish would not be a good move). There should be food present that he likes eating as well. The idea is to start building positive associations with the averse food. Once enough positive associations are built, a person is usually more open to trying the averse food. This is just one possible method. The best method for you depends on how severe your son’s aversions are, his specific circumstances and his willingness to make progress.

    I hope this is helpful. It’s all general advice and the best thing you can do is to find a specialist in your area that can meet with you and your son and figure out the best way forward. Much luck to you!

    1. I really like this answer and just wanted to add a bit to it. I am a Licensed Psychologist who specializes in treating anxiety disorders, OCD, and phobias. Children can become very fearful of food for many reasons, including extremely negative experiences like your son had with his celiac, choking experiences, vomiting experiences, etc. If you decide to seek professional help, a therapist specializing in treating anxiety/phobias and OCD would likely be the best at handling this delicate situation. (Just to clarify, I’m not saying anyone with food aversions has OCD, but providers who regularly work with OCD are more likely to have the proper training.) These providers work constantly with kids who have very intense fears with a Cognitive-Behavioral treatment approach called Exposure with Response Prevention. It can be very effective for treating intense anxiety reactions in a gradual, humane, stepwise fashion. A good place to find providers who are well-versed in this type of therapy are websites like IOCDF.org and ADAA.org.
      I hope this information is helpful to you and wish you all the best!

  25. I had the same problem when I was a teenager, and still get it now sometimes (I’m 28). I highly recommend considering the overall amount of stress in your son’s life. Is he happy? Is school overwhelming? does he have enough time to relax and hang with his friends? In my experience if I have consistent stress almost all foods make me feel nauseous. (Not to get too personal, but you might be stressing him out, I don’t know…). Then also, other people said this but those other foods very well might be making him sick. I have celiac disease too and it’s ridiculous the amount of other foods (that have no chance of gluten cross-contamination) that give me mild symptoms. Definitely listen to him if he says something makes him sick. Calling it an eating disorder is not going to help the situation. One more thing, I get regular B-12 injections once a week and this has helped me SO much. hope that helps!

  26. Just yesterday I went to a Nutritionist to discuss my celiac/food. I told her I did not even know what to eat anymore at this point since I am having so many problems crop up in addition to the Celiac disease everytime I eat. She started the session with…lets get you back to the point where food you can eat is fun and healthy. Ha!??? We discussed all my food likes and dislikes and problems associated with all of it. She asked about vitamin deficiency ( D and B12) etc…She listened and then I left with a plan in hand with food and lifestyle ideas…I will give it 2 weeks, go back to her and will see how it goes. I do recommend you take your son to a dietician/nutritionist, one that works well with kids/young adults. Also get some bloodwork done to see how he is doing inside… I feel hopeful for the first time in a long time. Good Luck and isn’t it great we have this forum?!!!

  27. Lighthouse Celiac

    So many of us have such unique stories and health issues. I hope that something someone says helps you as a Mom. I feel like at 13 I had Celiac and didn’t know. I was diagnosed as pre-diabetic. Whatever that meant, the damage was already occurring. This was the early ’70’s!! You and your son are so fortunate to have this diagnosis. So many go decades and so much unnecessary damage for so many of us. So my two cents is, as anything in life, to dwell on the positive of knowing “the monster” and starring it down. That journey requires such patience and understanding. Give him control of his disease. Easily said right? He will live all his life with this looming over him. He will learn many things that we all do. He is in infancy in the first year. Be sure your words are always laser focused reality. Unless a health care diagnosis him with an eating disorder it isn’t really reality. His body will take its own time to heal. As it does his confidence will grow. You can’t do this for him but you can be the cheerleader on the sidelines. He is taking control and wants control. Give him that, and head out to freak out behind closed doors. Encourage him tenderly. Let him teach you about his unique disease choices, mentally and physically. I can honestly say I would rather have Celiac myself then see my sons suffer. I can’t begin to imagine your worries. Take care of yourself. It will all work out somehow. XOXO

  28. I belong to a CSA which also has a pick-your own component. Maybe something like that? It gives options for trying new foods, and smelling tomatoes, herbs, etc. Or take him to a farmer’s market with you to check out different varieties of things? I’ve also found it very helpful to have a localish gluten-free bakery (g-f and vegan), they’ve started making some amazing stuff. For meat, maybe locally raised, if you can afford it?

    Giving him the tools to cook might also help him feel like he has some control over his diet. Maybe have something like a taco-making party one night? Or a make-your-own-fried rice? Something where there are lots of components and he can pick and choose a little bit… Or if he likes shows like Chopped, make your own at-home version…either have him pick out the ingredients, and then come up with something, or pick out the ingredients and let him have fun with them.

  29. I am so sorry to hear about what you and your son are going through. Although I can’t relate exactly, I went through a phase after my celiac diagnosis (at age 17) when I was scared of eating any “unhealthy” gluten free food. I think my mindset was that my food had made me sick before (with gluten damage pre diagnosis and I was eventually hospitalized with malnutrition and vitamin deficiencies when my body didn’t heal on a gf diet as normal), so I could make myself “well” by only eating veggies, protein, fruits, etc. Of course, that wasn’t healthy long term and it didn’t help me gain the weight I desperately needed. I think one of the changes that helped me was doing my own grocery shopping (or going with my mom) and being able to choose out different products/produce/etc that I’d never tried before. This let me feel more in control over my diet and, since I’d never tried any of these foods before, I didn’t have any “good” or “bad” associations with it. I wish you the best and if your son every wants to talk to someone closer to his age, he’s welcome to reach out to me at Casey the College Celiac. Healing from and thriving with celiac disease takes time, but just know that there is light at the end of the tunnel.

  30. Little late to the game, but I am so sorry to hear what you and your son are going through! I can relate oh so well. I would STRONGLY recommend seeing a therapist — I’ve been doing CBT (cognitive-behavioral therapy) for several years for these exact issues, and it’s been beyond helpful. My GI doc and a dietician provided recs for therapists; you might find resources in similar places.

    Good luck!

  31. Sort of a PSA: In case any lurkers out there may be struggling with disordered eating beyond what you’re seeing described here–there’s research now showing a link between celiac and anorexia nervosa.

    Including that they can be misdiagnosed as each other.

    In my case, undiagnosed celiac made me aware that something I ate was giving me problems. I became severely orthorexic–not concerned with weight, but with “curing” myself through nutrition. I became severely underweight and psychologically precarious in the name of what I assumed would one day be health. Unlike some here, these obsessions did not really go away even after I stopped eating gluten. It took years to realize that what I thought was ongoing appropriate caution was actually an ongoing restrictive eating disorder.

    If you’re finding that celiac and gluten-free dieting is causing you to become obsessive about food, isolated, undernourished, controlling, constantly searching for recipes you don’t make, spanding WAAAY too much on food that is organic, pure, healthful, etc., and restricting well beyond the limits of a GF diet–consider that you may have an eating disorder along with celiac. EDs are very dangerous and hard-to-spot conditions but also very treatable. They do NOT only look like “skeletal white girls who starve themselves on purpose”–this is one presentation, but most cases are invisible, including to the sufferer who thinks everything is normal and fine. Treatment involves (a) deciding that you need to turn it around no matter what, (b) getting enough calories to reverse the damage, and (c) not going back to restricting, ever. This is psychologically challenging but it does work, especially with the support of family and friends.

    Also, parents of kids with celiac–do some research on EDs to make sure you know the signs. Even if your kid doesn’t ever develop one, you could save a lot of heartache for someone else’s kid if you notice something their own parents don’t!

    Thanks, Gluten Dude, for bringing up this topic–and here’s to everyone with or without celiac getting enough of the food that keeps them going.


  32. An old post, but I’m chiming in since I didn’t see the type of aversions I have. Of course I have a few of the “I got sick so keep that away” types, but I can’t stand textures. I never had this before until my immune system went whack (I have RA, too). If a burger is too thick, FORGET IT. Chicken? Skip the breast…too thick…too much. YUCK. I’ve even had too thick of chicken strips and nearly lost my mind. Arby’s roast beef?! That fake pressed shiny stuff!? NO.FREAKIN.WAY. So, it’s not because I’ve had bad experiences, it’s just that I suddenly can’t tolerate textures and consistencies of things. Some nights I don’t eat at all because of it. Can’t gluten and can’t eat the textures that something turned out to be. Food is now my enemy. I can’t win.

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Who I am. And who I'm not.

Who I am. And who I'm not.

I AM someone who's been gluten-free since 2007 due to a diagnosis of severe celiac disease. I'm someone who can steer you in the right direction when it comes to going gluten-free. And I'm someone who will always give you the naked truth about going gluten free.

I AM NOT someone who embraces this gluten-free craziness. I didn’t find freedom, a better life or any of that other crap when I got diagnosed. With all due respect to Hunter S. Thompson, I found fear and loathing of an unknown world. But if I can share my wisdom, tell my stories and make the transition easier on you, I’ve done my job.

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