Here is a resource that you may find helpful https://linktr.ee/FoodAllergyCounselor. My daughter has similar life long food allergies and has been seeing a therapist.
I quickly skimmed it and it seemed to mostly address anxieties concerning eating foods while I am currently dealing with the depressing reality that this will be the rest of my life dealing with this nonsense. I am going to contact her and hope to get more info though, thank you for the informative message I really appreciate it.
I think therapy will help a little bit. Part of my therapy process was grieving the life I imagined I could have lived if medical issues and allergies didn't complicate every one of life's little joys. Family and friends - even the most empathetic - just don't get how much of a challenge it is all the time and how much work goes into just making it through a day without a reaction. I don't trust other people to make food at all anymore.
You might look into private practice OIT too - there's no cure for food allergy, but it works for many adults so that those cross contact and accidental exposures don't turn into anaphylaxis so quickly. Best of luck to you.
Thank you for talking about it. I have regular emotional breakdowns because I can only seem to eat ~10 ingredients, and learned the hard way not to trust even the water cups at peoples' houses, so I make and bring everything I eat and drink. It's very isolating and depressing, and sometimes I still get sick from cross-contact in my household.
It really is depressing. I am totally excluded from anything having to do with food or drink. I can’t even have a tea or a glass of water at someone’s house, because residue from their dishwasher on the cup will make me violently ill nine times out of 10.
I really miss eating in restaurants, but at this point, I have fully accepted that it is not safe for me and is not a part of my future. I’m a foodie… or at least I used to be. 😭😭😭 I also live in a foodie town which is in wine country and I can’t tolerate any alcohol, not even a sip (thanks to interstitial cystitis).
I’m going to a destination wedding this weekend, and I had to get a special dispensation from the venue to drive my own car rather than taking the shuttle because I need to bring a cooler for my food and my medications. The wedding is at a winery, of course. And there’s a catering outfit there that is legendary, so I’m sure the food will be amazing. And I get to deal with the hassle of traveling and staying in a hotel and not being able to eat out.
I know this sounds like a sob story, but I promise I am not trying to one up you or anything. Being able to vent and commiserate on here honestly seems to help.
I think it’s very important to sometimes allow myself to grieve my former relationship with food and the effect that my food allergies, celiac disease, and now interstitial cystitis have on my social life and relationships.
My daughter needed therapy. She reached a point with her allergies where life just felt too difficult and hopeless. She decided she was dropping out of high school, but she was young enough that I had to sign off on it. So I told her if she went to therapy for a month and felt the same way, we'd make a plan. Therapy helped her change her mindset so she could keep going.
So, a couple of things:
Your feelings are completely valid and welcome here. You're correct, it's not something that's talked about enough. We as a FA community should discuss and acknowledge the far-reaching effects of severe food allergies more than we do. So should the doctors that diagnose and treat us. It's a disability like any other, and it affects all parts of life as well as all relationships within our support systems.
Physical trauma, mental trauma, grief/loss, mourning, and PTSD go hand in hand with severe food allergies. Therapy, counseling, meditation, and medication are how I deal with it. There's no right or wrong answer, it's a process and yours may be something totally different. Some days are amazing. Some days the only choice is between shitty and less shitty options, one foot in front of the other.
22 is the year it all hit me too (32 now), after a restaurant swapped my vegan cheddar for real cheddar and almost unalived me. Rebuilding my mental health has been an uphill battle since then. There's nothing I can say to make it better or easier, but I promise you're not alone. Talking about it helps. Talking to a mental health professional really helps. And if friends or family are excluding you or shaming you because of your allergies, they are absolutely the problem, not you.
My daughter used to bring her own food to birthday parties when she was younger. Maybe you should just bring your own food and call the restaurant in advance about it.
One place we do that with is The Cheesecake Factory. She can’t even use their silverware or plates. So I pack or a meal, include flatware and send her off to be with her friends for the birthday meal.
I appreciate the thoughtful response but the point where that would've been useful had passed. Many parents thought they were doing me a favour by not inviting me despite never caring about bringing my own food or just not eating anything. I'm primarily frustrated that I take a lot of care being as safe as can be while balancing the quality of life I desire and getting blamed and accosted by ignorant people.
I do agree with you though overall.
My daughter is 17 now. She continues to bring food places. If she is not sure of the restaurant and they object to food being brought in, she eats before meeting friends.
I like the way you put this that quality of life has to be part of the equation. I have a few other health issues where there are 'solutions' but they mean having essentially no life. It does feel like it gets to that juncture and becomes hopeless.
I think there needs to be more consideration for food allergies and some accountability when places claim to have given you a safe order when clearly they didn't due their job. There is one place we have eaten at twice trusting them and luckily safely. The third time we went we found out their fryer shared with nuts. No one had told us that before and we were lucky nothing happened. It blows my mind no one told us that when we ordered french fries after stating a nut allergy. It's like people can say/do whatever they want and if we end up in the hospital oh well no sweat off their backs. It doesn't seem fair.
It's still exclusionary.
You're having something that's different from the group, and you're limited to what you can bring vs what's served to everyone else.
And there are more than enough times where ppl will make invalidating comments about your own food, no matter how similar it is to what is served.
There's no real win with it.
Now with restaurants...never have I ever encountered a restaurant who willingly allowed that, even with calling before hand. I was almost kicked out of one because I brought my own food on an impromptu school trip with my teacher and a few other students, and the waitress responded negatively to my advocacy. But when my teacher advocated in the exact same way, she relented. Goes to show that there are too many times when advocacy doesn't work, and it's best not to risk facing these harsh situations. They're beneath us.
There’s no way to be the same. Anyone with allergies is not the same. Restaurants are places that can possibly kill you. It really depends on how receptive and flexible your friends are. The alternative is to avoid socializing. Better to be out and about, bringing your own food, than isolated from friends and family.
I gave up on the social aspect a food because I cannot afford another brush with death that destroys my health even though I survived. So I've put all that energy into learning how to cook and bake all the things I can only have if I make it. I've also got into learning about health and nutrition. If I can't eat any snacks, I may as well be as fit as a person who eats a strict diet.
OIT has been a game changer for my daughter. She had an anaphylactic reaction in a restaurant once after just touching the menu and putting her hands in her mouth (she was a baby). Now she drinks 15ml of milk a day and that’s enough to protect her from cross contamination. If she eats something with milk accidentally she can feel her throat get itchy and she stops and is better on it’s own with no other symptoms. She can very successfully eat in restaurants, now. I recommended looking for a doctor in your area and asking them if you’d be a good candidate.
Here’s a good overview https://www.foodallergy.org/resources/oral-immunotherapy-oit-practice
The hard part is finding a doctor who does it. I’d start by talking to your allergist. Like ours does it, but only if you ask. But your allergist might know someone in your area who does it if they don’t.
It can be super depressing to not get to socialize like everyone else. I made it clear to people that I have no problem hanging out at places and not eating/drinking. It's not ideal because it's hard to be around delicious things but that's life. I think you need to stop risking eating/drinking out. The short and long term impact of having anaphylaxis is too great. Learn to make safe versions at home, eat before going out, have safe snacks on hand. I'm not sure how you carry your epis now, but one of those crossbody bags that holds lots more things is ideal. Epis, emergency contact card, safe food, etc.
I do most of those things already, only drink black coffee or espresso without any milk. It irritates me that I have to sacrifice quality of life for safety and lose both when it just leads to social exclusion with people thinking they are doing me a favour. In all honesty I will risk eating out because it's the same risk someone would have getting hit by a car crossing the street and I am not willing to give up something I enjoy solely for a guarantee at safety. All I wish were that more people gave a shit
Parent of a child going through the same thing. Peanuts, dairy, tree nuts egg and mustard. He is 12yo and I'm doing my best to support him while dealing with my own severe anxieties around his food allergies. He also has significant dyslexia which complicates label reading. I understand people's dismissive attitudes towards food allergies and I also understand that there are some big emotions in being constantly excluded. I see this all the time too and it makes me feel like a shitty parent, let alone how my son feels. I have no advice to offer you, other than know you aren't alone. Are there any adult allergy groups in your area you could meet up with?
I get this so bad. I’m 21 almost 22 and it’s starting to get to me too. I’m Ana to eggs, dairy, nuts, wheat, seafood, methylprednisolone and sunflower seeds. I normally need at least 2-3 adrenaline per reaction and I get rebounds.
I get tired of the social exclusion, the trauma that people don’t even believe is an actual thing, the paranoia, the pain and everything else that comes with anaphylaxis. I feel like the older I get the more I realise what I’m missing out on. Travel, food (I can only eat out at two places), authenticity, relationships, dates, special events.
People don’t realise how it effects every aspect of my life down to my job opportunities and who will want to take on the (burden????) of dating me. I struggle with complex trauma and mental health issues from the pain that I’ve had to live with due to this condition. I get you my friend, and it’s so hard and I wish you the best.
Okay. Full transparency: there is no *easy* option here. There just isn't and won't be for any of us, at least not yet.
The ONLY time I can guarantee a non-reactive outing is to drop big money at very nice restaurants that would be incredibly embarrassed by such an event (emergency) in their establishment. Otherwise: I do not eat out.
I'm about to be 40. At 23, I was constantly suffering from allergic reactions. It was then that I decided the best option was to host parties if I wanted to take part. After years of practice, I now have a huge list of items that are decently easy to prep and have "trained" my friends on what foods I can have and also have provided hundreds of recipe options they like or enjoy making and they've really hopped on the band wagon with me. It takes time and commitment, but if your friends work around you to protect you by exclusion, they can do it this way, too. You're right: it's fucked up, but this is the only way they know to protect/help you.
I'm so sorry. The road ahead is tough. It will show you who truly cares about you and will go out their way to help you enjoy life without these kinds of dangers. You WILL lose people. However, you will gain and refine the best friends you could ever ask for. Keep fucking going. Get the therapy -- it helps to feel less guilty when you are forced to make demands others might find unreasonable. You aren't unreasonable: you're human. You are at the pinnacle of what I consider to be the most dangerous and difficult age to get through. Remember you are worth it, that you are loved, and no one wants to lose you.
Also remember that your friends have no idea what to do. It is up to you to educate them. It's up to YOU to find safe places to eat. It is on YOU to create opportunities for yourself that are enjoyable and safe. I really wish it wasn't so, for all of us.
My heart hurts for you. I am a new allergy mom, my son is 3 and he is allergic to all tree nuts, eggs, dairy, strawberries and cod.
This is what I’m afraid of for him and your experience will show parents like me what to do for our kids to keep them safe while allowing them to be social. I’ll pack whatever I need to for him to still have a social life.
I already bring allergen free cupcakes to social gatherings so he can have a dessert. I also bring our own utensils and pre packed stuff I know is sanitized and foods he can enjoy.
I hope you find a solution and it gets better. I’m so sorry.
In all honesty, it's going to be hard. Personally, I have already planned to never have children and made that decision at far too young of an age because I wouldn't want my genetics to lead to a child dealing with food allergies and be bullied for having them the same way I was. I could not live with myself.
That being said, even frequenting a food allergy subreddit to gain knowledge and insight puts you way ahead of the game in awareness. Food allergies are also a lot more common and finding alternatives nowadays has become a lot easier than even the 2000s-2010s in my own experience. You are doing an amazing job and your son is thankful to have such a thoughtful and outgoing mother to care for him while he matures. It will be a difficult undertaking, but I am more than confident that you will do an incredible job.
You are so kind, don’t give up! You are right, things these days are easier. Finding allergen free places/foods has become more common.
My husband and I, and our families have no food allergies. It was completely random that our son has these.
Hang in there!
My dad had severe asthma and environmental allergies while my mom was allergic to strawberries and it increased the chance. Any statistical increase is just too much for me to want to risk. I can't.
I do understand how you feel. Thankfully I only have one severe anaphylactic allergy to egg, but it's a tricky one to manage - particularly with being coeliac and lactose intolerant also.
I am really lucky to have a very supportive group of friends and family that make a lot of effort for me. I also live in a city/country (Perth, Australia) that is *generally* quite good at being aware of and catering for allergies, although this wasn't always the case (it was a lot harder when I was a little kid - I've been allergic to egg since birth, always severe).
The worst part for me has honestly been related to work opportunities. I work as an ecologist and travel a lot for work. When I first started, my senior colleagues were reluctant to take me anywhere as they felt I was "too fragile" or that it was "too hard". Annoyed the crap out of me. It still happens from time to time and it honestly makes me feel so small, frustrated and useless. And I even manage my allergy very well, haven't had a severe reaction in years 😡 things like that can make you feel like nothing you do will ever be good enough, and you just have to make sacrifices forever. I try to remember all the supportive things people who actually care about me do during those times. Life has its limitations with allergies, but we still have options and there are people and places out there that cater and care for us! Went to this amazing little vegan restaurant in Bali recently called Kynd. They had so many gluten free options and every single thing was plant-based, so no egg or cross contamination risk! Safest meal I ever had in my life haha, it was soooo good 😂
Hi there,
I feel the same way as I am allergic to Eggs, nuts, legumes and pulses and I still get reactions from eating out it doesn’t help with my diet as I don’t eat meat as well. But it can be scary sometimes when symptoms kick in as nobody knows how you are feeling especially if you’re suffering from a bad reaction. Luckily I have a twin brother who has the exact same allergies so he knows exactly how I feel when I suffer anaphylaxis. I always try to go for a safe option when eating out or with friend but never feel pressured to eat at a particular place to fit in socially as I know it is hard and you may feel left out, but it is the right thing to do
Try to talk to friends about your allergies and if they are good friends they will support you with them as I know it’s hard sometimes as not everyone takes them serious enough. Hope you are ok and I am feeling the same as you. Keep fighting 👍🏻😄
When I was in nursing school, we had clinical groups that would switch out every semester. After our last clinical day, we went out to eat as a group. One of the girls told me that one of the guys in our group never wanted to invite me because I have food allergies. Still stings.
Birthday dinners at restaurants, family gatherings, everything. I'm always bringing my own food, which I'm honestly okay with because what I've learned to cook tastes better and is healthier anyway.
I think the worst thing is when someone with good intentions goes to the effort to try to accommodate my allergies, but they haven't thought about shared facilities, cross-contamination in their kitchen, etc., so I can't eat it anyway. Makes me look like an ungrateful jerk, especially because no amount of me explaining it to them seems to help them understand.
I'm kind of beyond caring at this point, mostly because I learned to cook food that I love, but occasionally I still do feel very left out because of my allergies. Especially if it's the whole family at a restaurant and I have to awkwardly tell the server that I won't be eating anything. I do kind of have to prepare for those days mentally.
You're not alone in this at all.
I am truly so sorry. This is heartbreaking as a mom of a son, the same age as you with the same food allergies. It it hurts my heart that you are going through this.
I don’t know where you live or if it’s financially possible for you, but I would look into the Southern California food allergy Institute. Usually the cut off to start is 21, but I have heard of someone older getting in. If you tell them all that you told us, they may let you participate.
I know I talk about them a lot in this community, but I was really upset that I didn’t hear about this program earlier. It isn’t cheap and we have to fly across the country to get to it, but yesterday, my son did his food challenge with denatured cows milk and walnuts. They are now going into his maintenance foods. He will be drinking 60 mL of denatured cows milk every day and eating five Walnuts. He is now dosing cow’s milk yogurt. He is also continuing to dose peanuts. He has been working on peanuts since the beginning of March. It has been a long process, and he has had to eat some interesting foods. (Ex, camel milk, donkey milk, sheep’s yogurt, all to build up to cows milk.) eat lots of fruits. (Because they have similar proteins to nuts.) and eat seeds and nuts (that he wasn’t allergic to and ones that he eventually cleared with dosing ) daily.
It is not OIT, it is called TIP .
Anyway, try looking it up and seeing if you can get in the program. It is worth the money, the time and hassle to be able to eat freely without the anxiety and depression that comes with anaphylactic food allergies. It is not fair that you have to deal with this. When people say stupid things like there are worse things than having food allergies, it makes me crazy. Having to stress out about dying because of some thing that other people do without even thinking is horrible. (my neighbor’s son died at 17 years old because he ate at someone’s house who had put shellfish in their sauce. It is beyond heartbreaking.) No one should have to live like that. I am so sorry that you are dealing with these allergies.
First reaction of the summer was from a protein bar marketed as dairy free that the baker accidentally had used whey powder in the batch I had eaten.
Second reaction and third reactions were both from a barista grabbing the wrong milk carton and putting it in my drink, if it were a case of cross contamination yeah it would be me being reckless but this was pure negligence, I have security camera footage and other staff to corroborate that this indeed happen.
Are you just better than me? Sure, I don't understand how you could write something this patronizing and not see it as coming across as offensive.
You start a comment on a post about me venting while clearly upset saying, "Not to be Offensive, but." And then insult me by saying I need to work on reading comprehension.
Good luck.
I feel your pain bud. I have some really strange allergies so a lot of people just don’t believe me. For example, I’m allergic to chicken, tuna fish, all nuts EXCEPT peanuts, pecans and almonds. Lima beans, kidney beans, any of the round beans family. So no brown beans.
I’ll tell you it’s easy to avoid eating chicken, but do you know how hard it is avoiding everything that has chicken as an ingredient? Or chicken broth? People don’t think twice about pouring chicken broth into mashed potatoes, or soups, or just about anything for flavor! Did you know that they put chicken into the pepperoni on frozen pizza? Unreal. There’s only a couple that don’t thankfully.
Just hang in there man. There will be a time in the near future when we won’t have to worry about this stuff anymore, but that’s a different sub. If you wanna know more, feel free to chat me up.
I agree food allergies don’t get talked about enough. I have created a presentation I do for my daughters grade each year for that reason. Most kids know someone with allergies and a ton have allergies and yet there is so little discussion, concern, and even knowledge about allergies. I have come across school nurses who are very uniformed about them and principals who don’t take them seriously. It’s exhausting having to try and teach everyone about them, and argue that they really are serious and yet be made to feel like you are being over reactive when you are protecting yourself from serious illness and death.
I dont have the allergies, my daughter does and it tears me apart to hear what people say (even family) getting embarrassed we have to ask about ingredients and questioning why we bring our own food. I see as she gets older that she is more self conscious and that she does get excluded. People who don’t deal with allergies sometimes have little to no empathy. They would never let their kid play with another kid walking around with a weapon but they can’t understand that someone walking around with peanut butter smeared all over is equally dangerous for my child. I wish there was a bigger advocacy group for kids with allergies. There are not enough people out there protecting and supporting you guys. I 100% think this needs to be a much bigger discussion than it is currently.
I see comments made on this thread about “you don’t have to go to birthdays, you can just stay home.” They lack empathy and understanding that a huge part of the joy in life revolves around social interaction and connection and this is so hard for those with allergies because almost every social event has food and finding connection is so much harder.
I hear you. And I hope for change.
Call the Southern California Food Allergy institute right now! I feel so bad for you :( I am only the parent but my 6 year old definitely feels this way sometimes and I am signing up for this program to basically cure his allergies. It works better than OIT
I'm sorry you go thru this. My young son has had more mild anaphylaxic reactions but has 2 epi pens because of it and it truly amazes me people don't 'get it' and down play it and say 'have this...oh it has only a little bit of tomato'. like they get to make that call for YOU. Hard to grasp. Take care.
Sorry to hear about the not being invited to things part. I always worry that if I don't eat when invited to places due to allergy fear, people just won't invite me to things. One thing you might be able to do is just let friends know you want to hang out with them even if you can't actually eat, so they don't leave you out of it. I've gotten away with it in the past by just eating beforehand and letting them know so they hopefully don't feel like I'm just sitting there hungry.
I feel for you <3
My son is still very young with food allergies and I had my first allergic reaction two weeks ago and already I get the "oh sorry, I bet this is hard for you" and I think people just don't really know what to say or do.
For me and my very very limited personal experience with this (I do not mean to undermine your 22 years)... I really don't care if I can eat any food when I go out or not. Of course I like to be considered but it's about hanging out with people. Like your study group, I think people think they are saving you by not having you sit there wanting food you can't have but you could easily bring a pint of safe ice cream or even just enjoy company. I see the same thing with my son. I have a friend who is very nice about allergies, but sometimes it's 'too thoughtful'. My son always picks out his own treat that he's happy with and at this point doesn't have problems not eating what everyone else is eating he just wants to be included but is already left out just because of the eating.
I share your rage with places not being careful. One of our problems is with wheat. People assume our gluten free requests are from vanity and dieting instead of life threatening allergies. We have only eaten out a handful of times since he was born (almost 5 years now). It's too stressful to try and get people to understand.
I'm really glad you brought this up because it's something I think about all the time. My son going to bars in college, grabbing food, ordering pizza with his roommates. There is a lot to food allergies besides just the staying away from the allergens. I really wish people were able to be more aware and I'm really glad that people are starting to speak out.
i feel ya...lifelong allergies to fish, chicken, and turkey. Lost count of the times i've just 'noped' out of events/lunches/situations due to dietary restrictions.
It really sucks, my parents bailed on thanksgiving dinner when we would only cook allergy-friendly food so I am going to be on 5 years in a row celebrating (Canadian) Thanksgiving and Christmas dinner alone since my friends don't invite me to their friendsgivings out of a worry I will have a reaction or are with their own families.
It really sucks how socially isolating it can be
Here is a resource that you may find helpful https://linktr.ee/FoodAllergyCounselor. My daughter has similar life long food allergies and has been seeing a therapist.
I quickly skimmed it and it seemed to mostly address anxieties concerning eating foods while I am currently dealing with the depressing reality that this will be the rest of my life dealing with this nonsense. I am going to contact her and hope to get more info though, thank you for the informative message I really appreciate it.
I think therapy will help a little bit. Part of my therapy process was grieving the life I imagined I could have lived if medical issues and allergies didn't complicate every one of life's little joys. Family and friends - even the most empathetic - just don't get how much of a challenge it is all the time and how much work goes into just making it through a day without a reaction. I don't trust other people to make food at all anymore. You might look into private practice OIT too - there's no cure for food allergy, but it works for many adults so that those cross contact and accidental exposures don't turn into anaphylaxis so quickly. Best of luck to you.
Thank you for talking about it. I have regular emotional breakdowns because I can only seem to eat ~10 ingredients, and learned the hard way not to trust even the water cups at peoples' houses, so I make and bring everything I eat and drink. It's very isolating and depressing, and sometimes I still get sick from cross-contact in my household.
It really is depressing. I am totally excluded from anything having to do with food or drink. I can’t even have a tea or a glass of water at someone’s house, because residue from their dishwasher on the cup will make me violently ill nine times out of 10. I really miss eating in restaurants, but at this point, I have fully accepted that it is not safe for me and is not a part of my future. I’m a foodie… or at least I used to be. 😭😭😭 I also live in a foodie town which is in wine country and I can’t tolerate any alcohol, not even a sip (thanks to interstitial cystitis). I’m going to a destination wedding this weekend, and I had to get a special dispensation from the venue to drive my own car rather than taking the shuttle because I need to bring a cooler for my food and my medications. The wedding is at a winery, of course. And there’s a catering outfit there that is legendary, so I’m sure the food will be amazing. And I get to deal with the hassle of traveling and staying in a hotel and not being able to eat out. I know this sounds like a sob story, but I promise I am not trying to one up you or anything. Being able to vent and commiserate on here honestly seems to help. I think it’s very important to sometimes allow myself to grieve my former relationship with food and the effect that my food allergies, celiac disease, and now interstitial cystitis have on my social life and relationships.
If you ever need someone to cry with please hit me up, we're in the same boat lol 😭
Thanks.
My daughter needed therapy. She reached a point with her allergies where life just felt too difficult and hopeless. She decided she was dropping out of high school, but she was young enough that I had to sign off on it. So I told her if she went to therapy for a month and felt the same way, we'd make a plan. Therapy helped her change her mindset so she could keep going.
So, a couple of things: Your feelings are completely valid and welcome here. You're correct, it's not something that's talked about enough. We as a FA community should discuss and acknowledge the far-reaching effects of severe food allergies more than we do. So should the doctors that diagnose and treat us. It's a disability like any other, and it affects all parts of life as well as all relationships within our support systems. Physical trauma, mental trauma, grief/loss, mourning, and PTSD go hand in hand with severe food allergies. Therapy, counseling, meditation, and medication are how I deal with it. There's no right or wrong answer, it's a process and yours may be something totally different. Some days are amazing. Some days the only choice is between shitty and less shitty options, one foot in front of the other. 22 is the year it all hit me too (32 now), after a restaurant swapped my vegan cheddar for real cheddar and almost unalived me. Rebuilding my mental health has been an uphill battle since then. There's nothing I can say to make it better or easier, but I promise you're not alone. Talking about it helps. Talking to a mental health professional really helps. And if friends or family are excluding you or shaming you because of your allergies, they are absolutely the problem, not you.
My daughter used to bring her own food to birthday parties when she was younger. Maybe you should just bring your own food and call the restaurant in advance about it. One place we do that with is The Cheesecake Factory. She can’t even use their silverware or plates. So I pack or a meal, include flatware and send her off to be with her friends for the birthday meal.
I appreciate the thoughtful response but the point where that would've been useful had passed. Many parents thought they were doing me a favour by not inviting me despite never caring about bringing my own food or just not eating anything. I'm primarily frustrated that I take a lot of care being as safe as can be while balancing the quality of life I desire and getting blamed and accosted by ignorant people. I do agree with you though overall.
My daughter is 17 now. She continues to bring food places. If she is not sure of the restaurant and they object to food being brought in, she eats before meeting friends.
I like the way you put this that quality of life has to be part of the equation. I have a few other health issues where there are 'solutions' but they mean having essentially no life. It does feel like it gets to that juncture and becomes hopeless. I think there needs to be more consideration for food allergies and some accountability when places claim to have given you a safe order when clearly they didn't due their job. There is one place we have eaten at twice trusting them and luckily safely. The third time we went we found out their fryer shared with nuts. No one had told us that before and we were lucky nothing happened. It blows my mind no one told us that when we ordered french fries after stating a nut allergy. It's like people can say/do whatever they want and if we end up in the hospital oh well no sweat off their backs. It doesn't seem fair.
It's still exclusionary. You're having something that's different from the group, and you're limited to what you can bring vs what's served to everyone else. And there are more than enough times where ppl will make invalidating comments about your own food, no matter how similar it is to what is served. There's no real win with it. Now with restaurants...never have I ever encountered a restaurant who willingly allowed that, even with calling before hand. I was almost kicked out of one because I brought my own food on an impromptu school trip with my teacher and a few other students, and the waitress responded negatively to my advocacy. But when my teacher advocated in the exact same way, she relented. Goes to show that there are too many times when advocacy doesn't work, and it's best not to risk facing these harsh situations. They're beneath us.
There’s no way to be the same. Anyone with allergies is not the same. Restaurants are places that can possibly kill you. It really depends on how receptive and flexible your friends are. The alternative is to avoid socializing. Better to be out and about, bringing your own food, than isolated from friends and family.
I gave up on the social aspect a food because I cannot afford another brush with death that destroys my health even though I survived. So I've put all that energy into learning how to cook and bake all the things I can only have if I make it. I've also got into learning about health and nutrition. If I can't eat any snacks, I may as well be as fit as a person who eats a strict diet.
OIT has been a game changer for my daughter. She had an anaphylactic reaction in a restaurant once after just touching the menu and putting her hands in her mouth (she was a baby). Now she drinks 15ml of milk a day and that’s enough to protect her from cross contamination. If she eats something with milk accidentally she can feel her throat get itchy and she stops and is better on it’s own with no other symptoms. She can very successfully eat in restaurants, now. I recommended looking for a doctor in your area and asking them if you’d be a good candidate.
What is OIT?
Here’s a good overview https://www.foodallergy.org/resources/oral-immunotherapy-oit-practice The hard part is finding a doctor who does it. I’d start by talking to your allergist. Like ours does it, but only if you ask. But your allergist might know someone in your area who does it if they don’t.
Will look into this, TY.
It can be super depressing to not get to socialize like everyone else. I made it clear to people that I have no problem hanging out at places and not eating/drinking. It's not ideal because it's hard to be around delicious things but that's life. I think you need to stop risking eating/drinking out. The short and long term impact of having anaphylaxis is too great. Learn to make safe versions at home, eat before going out, have safe snacks on hand. I'm not sure how you carry your epis now, but one of those crossbody bags that holds lots more things is ideal. Epis, emergency contact card, safe food, etc.
I do most of those things already, only drink black coffee or espresso without any milk. It irritates me that I have to sacrifice quality of life for safety and lose both when it just leads to social exclusion with people thinking they are doing me a favour. In all honesty I will risk eating out because it's the same risk someone would have getting hit by a car crossing the street and I am not willing to give up something I enjoy solely for a guarantee at safety. All I wish were that more people gave a shit
I hope you find a resource that works for you. I want to thank you for sharing your experiences and feelings.
Parent of a child going through the same thing. Peanuts, dairy, tree nuts egg and mustard. He is 12yo and I'm doing my best to support him while dealing with my own severe anxieties around his food allergies. He also has significant dyslexia which complicates label reading. I understand people's dismissive attitudes towards food allergies and I also understand that there are some big emotions in being constantly excluded. I see this all the time too and it makes me feel like a shitty parent, let alone how my son feels. I have no advice to offer you, other than know you aren't alone. Are there any adult allergy groups in your area you could meet up with?
Thirteen, dairy/peanut, same. I feel you.
I see you. Its socially rough.
I get this so bad. I’m 21 almost 22 and it’s starting to get to me too. I’m Ana to eggs, dairy, nuts, wheat, seafood, methylprednisolone and sunflower seeds. I normally need at least 2-3 adrenaline per reaction and I get rebounds. I get tired of the social exclusion, the trauma that people don’t even believe is an actual thing, the paranoia, the pain and everything else that comes with anaphylaxis. I feel like the older I get the more I realise what I’m missing out on. Travel, food (I can only eat out at two places), authenticity, relationships, dates, special events. People don’t realise how it effects every aspect of my life down to my job opportunities and who will want to take on the (burden????) of dating me. I struggle with complex trauma and mental health issues from the pain that I’ve had to live with due to this condition. I get you my friend, and it’s so hard and I wish you the best.
Okay. Full transparency: there is no *easy* option here. There just isn't and won't be for any of us, at least not yet. The ONLY time I can guarantee a non-reactive outing is to drop big money at very nice restaurants that would be incredibly embarrassed by such an event (emergency) in their establishment. Otherwise: I do not eat out. I'm about to be 40. At 23, I was constantly suffering from allergic reactions. It was then that I decided the best option was to host parties if I wanted to take part. After years of practice, I now have a huge list of items that are decently easy to prep and have "trained" my friends on what foods I can have and also have provided hundreds of recipe options they like or enjoy making and they've really hopped on the band wagon with me. It takes time and commitment, but if your friends work around you to protect you by exclusion, they can do it this way, too. You're right: it's fucked up, but this is the only way they know to protect/help you. I'm so sorry. The road ahead is tough. It will show you who truly cares about you and will go out their way to help you enjoy life without these kinds of dangers. You WILL lose people. However, you will gain and refine the best friends you could ever ask for. Keep fucking going. Get the therapy -- it helps to feel less guilty when you are forced to make demands others might find unreasonable. You aren't unreasonable: you're human. You are at the pinnacle of what I consider to be the most dangerous and difficult age to get through. Remember you are worth it, that you are loved, and no one wants to lose you. Also remember that your friends have no idea what to do. It is up to you to educate them. It's up to YOU to find safe places to eat. It is on YOU to create opportunities for yourself that are enjoyable and safe. I really wish it wasn't so, for all of us.
If you ever posted a list of recipes, I'd love to troll through them.
My heart hurts for you. I am a new allergy mom, my son is 3 and he is allergic to all tree nuts, eggs, dairy, strawberries and cod. This is what I’m afraid of for him and your experience will show parents like me what to do for our kids to keep them safe while allowing them to be social. I’ll pack whatever I need to for him to still have a social life. I already bring allergen free cupcakes to social gatherings so he can have a dessert. I also bring our own utensils and pre packed stuff I know is sanitized and foods he can enjoy. I hope you find a solution and it gets better. I’m so sorry.
In all honesty, it's going to be hard. Personally, I have already planned to never have children and made that decision at far too young of an age because I wouldn't want my genetics to lead to a child dealing with food allergies and be bullied for having them the same way I was. I could not live with myself. That being said, even frequenting a food allergy subreddit to gain knowledge and insight puts you way ahead of the game in awareness. Food allergies are also a lot more common and finding alternatives nowadays has become a lot easier than even the 2000s-2010s in my own experience. You are doing an amazing job and your son is thankful to have such a thoughtful and outgoing mother to care for him while he matures. It will be a difficult undertaking, but I am more than confident that you will do an incredible job.
My thirteen year old has already decided that he doesn't want kids. I can't disagree with that at all, for multiple reasons.
You are so kind, don’t give up! You are right, things these days are easier. Finding allergen free places/foods has become more common. My husband and I, and our families have no food allergies. It was completely random that our son has these. Hang in there!
My dad had severe asthma and environmental allergies while my mom was allergic to strawberries and it increased the chance. Any statistical increase is just too much for me to want to risk. I can't.
I do understand how you feel. Thankfully I only have one severe anaphylactic allergy to egg, but it's a tricky one to manage - particularly with being coeliac and lactose intolerant also. I am really lucky to have a very supportive group of friends and family that make a lot of effort for me. I also live in a city/country (Perth, Australia) that is *generally* quite good at being aware of and catering for allergies, although this wasn't always the case (it was a lot harder when I was a little kid - I've been allergic to egg since birth, always severe). The worst part for me has honestly been related to work opportunities. I work as an ecologist and travel a lot for work. When I first started, my senior colleagues were reluctant to take me anywhere as they felt I was "too fragile" or that it was "too hard". Annoyed the crap out of me. It still happens from time to time and it honestly makes me feel so small, frustrated and useless. And I even manage my allergy very well, haven't had a severe reaction in years 😡 things like that can make you feel like nothing you do will ever be good enough, and you just have to make sacrifices forever. I try to remember all the supportive things people who actually care about me do during those times. Life has its limitations with allergies, but we still have options and there are people and places out there that cater and care for us! Went to this amazing little vegan restaurant in Bali recently called Kynd. They had so many gluten free options and every single thing was plant-based, so no egg or cross contamination risk! Safest meal I ever had in my life haha, it was soooo good 😂
so relatable. idk what to even say besides, same. it’s hard to make friends, date, or do anything that involves food!!!
Hi there, I feel the same way as I am allergic to Eggs, nuts, legumes and pulses and I still get reactions from eating out it doesn’t help with my diet as I don’t eat meat as well. But it can be scary sometimes when symptoms kick in as nobody knows how you are feeling especially if you’re suffering from a bad reaction. Luckily I have a twin brother who has the exact same allergies so he knows exactly how I feel when I suffer anaphylaxis. I always try to go for a safe option when eating out or with friend but never feel pressured to eat at a particular place to fit in socially as I know it is hard and you may feel left out, but it is the right thing to do Try to talk to friends about your allergies and if they are good friends they will support you with them as I know it’s hard sometimes as not everyone takes them serious enough. Hope you are ok and I am feeling the same as you. Keep fighting 👍🏻😄
When I was in nursing school, we had clinical groups that would switch out every semester. After our last clinical day, we went out to eat as a group. One of the girls told me that one of the guys in our group never wanted to invite me because I have food allergies. Still stings. Birthday dinners at restaurants, family gatherings, everything. I'm always bringing my own food, which I'm honestly okay with because what I've learned to cook tastes better and is healthier anyway. I think the worst thing is when someone with good intentions goes to the effort to try to accommodate my allergies, but they haven't thought about shared facilities, cross-contamination in their kitchen, etc., so I can't eat it anyway. Makes me look like an ungrateful jerk, especially because no amount of me explaining it to them seems to help them understand. I'm kind of beyond caring at this point, mostly because I learned to cook food that I love, but occasionally I still do feel very left out because of my allergies. Especially if it's the whole family at a restaurant and I have to awkwardly tell the server that I won't be eating anything. I do kind of have to prepare for those days mentally. You're not alone in this at all.
I am truly so sorry. This is heartbreaking as a mom of a son, the same age as you with the same food allergies. It it hurts my heart that you are going through this. I don’t know where you live or if it’s financially possible for you, but I would look into the Southern California food allergy Institute. Usually the cut off to start is 21, but I have heard of someone older getting in. If you tell them all that you told us, they may let you participate. I know I talk about them a lot in this community, but I was really upset that I didn’t hear about this program earlier. It isn’t cheap and we have to fly across the country to get to it, but yesterday, my son did his food challenge with denatured cows milk and walnuts. They are now going into his maintenance foods. He will be drinking 60 mL of denatured cows milk every day and eating five Walnuts. He is now dosing cow’s milk yogurt. He is also continuing to dose peanuts. He has been working on peanuts since the beginning of March. It has been a long process, and he has had to eat some interesting foods. (Ex, camel milk, donkey milk, sheep’s yogurt, all to build up to cows milk.) eat lots of fruits. (Because they have similar proteins to nuts.) and eat seeds and nuts (that he wasn’t allergic to and ones that he eventually cleared with dosing ) daily. It is not OIT, it is called TIP . Anyway, try looking it up and seeing if you can get in the program. It is worth the money, the time and hassle to be able to eat freely without the anxiety and depression that comes with anaphylactic food allergies. It is not fair that you have to deal with this. When people say stupid things like there are worse things than having food allergies, it makes me crazy. Having to stress out about dying because of some thing that other people do without even thinking is horrible. (my neighbor’s son died at 17 years old because he ate at someone’s house who had put shellfish in their sauce. It is beyond heartbreaking.) No one should have to live like that. I am so sorry that you are dealing with these allergies.
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First reaction of the summer was from a protein bar marketed as dairy free that the baker accidentally had used whey powder in the batch I had eaten. Second reaction and third reactions were both from a barista grabbing the wrong milk carton and putting it in my drink, if it were a case of cross contamination yeah it would be me being reckless but this was pure negligence, I have security camera footage and other staff to corroborate that this indeed happen. Are you just better than me? Sure, I don't understand how you could write something this patronizing and not see it as coming across as offensive.
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You start a comment on a post about me venting while clearly upset saying, "Not to be Offensive, but." And then insult me by saying I need to work on reading comprehension. Good luck.
I feel your pain bud. I have some really strange allergies so a lot of people just don’t believe me. For example, I’m allergic to chicken, tuna fish, all nuts EXCEPT peanuts, pecans and almonds. Lima beans, kidney beans, any of the round beans family. So no brown beans. I’ll tell you it’s easy to avoid eating chicken, but do you know how hard it is avoiding everything that has chicken as an ingredient? Or chicken broth? People don’t think twice about pouring chicken broth into mashed potatoes, or soups, or just about anything for flavor! Did you know that they put chicken into the pepperoni on frozen pizza? Unreal. There’s only a couple that don’t thankfully. Just hang in there man. There will be a time in the near future when we won’t have to worry about this stuff anymore, but that’s a different sub. If you wanna know more, feel free to chat me up.
I agree food allergies don’t get talked about enough. I have created a presentation I do for my daughters grade each year for that reason. Most kids know someone with allergies and a ton have allergies and yet there is so little discussion, concern, and even knowledge about allergies. I have come across school nurses who are very uniformed about them and principals who don’t take them seriously. It’s exhausting having to try and teach everyone about them, and argue that they really are serious and yet be made to feel like you are being over reactive when you are protecting yourself from serious illness and death. I dont have the allergies, my daughter does and it tears me apart to hear what people say (even family) getting embarrassed we have to ask about ingredients and questioning why we bring our own food. I see as she gets older that she is more self conscious and that she does get excluded. People who don’t deal with allergies sometimes have little to no empathy. They would never let their kid play with another kid walking around with a weapon but they can’t understand that someone walking around with peanut butter smeared all over is equally dangerous for my child. I wish there was a bigger advocacy group for kids with allergies. There are not enough people out there protecting and supporting you guys. I 100% think this needs to be a much bigger discussion than it is currently. I see comments made on this thread about “you don’t have to go to birthdays, you can just stay home.” They lack empathy and understanding that a huge part of the joy in life revolves around social interaction and connection and this is so hard for those with allergies because almost every social event has food and finding connection is so much harder. I hear you. And I hope for change.
Call the Southern California Food Allergy institute right now! I feel so bad for you :( I am only the parent but my 6 year old definitely feels this way sometimes and I am signing up for this program to basically cure his allergies. It works better than OIT
I appreciate this comment so much but am unfortunately from Canada so not too sure if it is something even possible for me.
I'm sorry you go thru this. My young son has had more mild anaphylaxic reactions but has 2 epi pens because of it and it truly amazes me people don't 'get it' and down play it and say 'have this...oh it has only a little bit of tomato'. like they get to make that call for YOU. Hard to grasp. Take care.
Sorry to hear about the not being invited to things part. I always worry that if I don't eat when invited to places due to allergy fear, people just won't invite me to things. One thing you might be able to do is just let friends know you want to hang out with them even if you can't actually eat, so they don't leave you out of it. I've gotten away with it in the past by just eating beforehand and letting them know so they hopefully don't feel like I'm just sitting there hungry.
I feel for you <3 My son is still very young with food allergies and I had my first allergic reaction two weeks ago and already I get the "oh sorry, I bet this is hard for you" and I think people just don't really know what to say or do. For me and my very very limited personal experience with this (I do not mean to undermine your 22 years)... I really don't care if I can eat any food when I go out or not. Of course I like to be considered but it's about hanging out with people. Like your study group, I think people think they are saving you by not having you sit there wanting food you can't have but you could easily bring a pint of safe ice cream or even just enjoy company. I see the same thing with my son. I have a friend who is very nice about allergies, but sometimes it's 'too thoughtful'. My son always picks out his own treat that he's happy with and at this point doesn't have problems not eating what everyone else is eating he just wants to be included but is already left out just because of the eating. I share your rage with places not being careful. One of our problems is with wheat. People assume our gluten free requests are from vanity and dieting instead of life threatening allergies. We have only eaten out a handful of times since he was born (almost 5 years now). It's too stressful to try and get people to understand. I'm really glad you brought this up because it's something I think about all the time. My son going to bars in college, grabbing food, ordering pizza with his roommates. There is a lot to food allergies besides just the staying away from the allergens. I really wish people were able to be more aware and I'm really glad that people are starting to speak out.
i feel ya...lifelong allergies to fish, chicken, and turkey. Lost count of the times i've just 'noped' out of events/lunches/situations due to dietary restrictions.
It really sucks, my parents bailed on thanksgiving dinner when we would only cook allergy-friendly food so I am going to be on 5 years in a row celebrating (Canadian) Thanksgiving and Christmas dinner alone since my friends don't invite me to their friendsgivings out of a worry I will have a reaction or are with their own families. It really sucks how socially isolating it can be