The 3 Biggest Struggles of Traveling with Food Allergies

A coworker is leaving for Europe tomorrow; I have a vacation coming up; my brother is in New York; and my dad the pilot is as busy as ever flying everyone to their destinations. Travel is trending. But people with food allergies have to consider a lot of things that the average healthy person would likely never dream of when they print their boarding passes.

Here are my top three struggles when it comes to traveling.

1. Packing your beach hat, wallet, book… and breakfast, lunch and dinner for the next week.

Tonight I’ll be packing for a mini camping trip this weekend, and during my lunch break at work I’m making my usual pre-trip list. On top of what clothes and shoes and toiletries and whatever other necessities I need to pack, I have to evaluate my eating situation.

Okay, we’re camping. No electricity, so no microwave or oven, so no hot food. Unless there’s a grill? Then I’d need to pack foil to cook my burger on; God knows what was cooked on the grill before. What’s easy and portable? Snacks like fruit, chips and pretzels. I could make a sandwich for lunch and keep it in a Ziploc baggie in my drawstring bag. We never know where or when we’ll be eating lunch. For dinner… another sandwich? Unless there’s a grill.

And that’s my thought process just for a weekend. For longer trips, it’s almost easier to pack a few snacks for the road or plane ride, then buy groceries at the destination.

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Overcoming the struggle: Do your research and plan ahead. Where you’re heading, are there nearby grocery stores? What can wait to be bought until you get there? What will you eat if your flight gets delayed or canceled and you’re stuck at the airport? Does your accommodation include a microwave, kitchenette or full kitchen? If you don’t know, call ahead and plan accordingly. If you have a refrigerator or mini fridge, you can buy perishable items like fruit, lunch meat and salads.

2. Staying calm when TSA confiscates your peanut butter.

Once when my family was traveling together, my mom packed my usual go-to traveling meal: a roll of bagels and a jar of peanut butter.

Who knew peanut butter was on the no-fly list?

When the TSA agent told me he had to confiscate my peanut butter, at first I couldn’t help but laugh. When I realized he was serious, I was not amused, and neither was my mother. My mom tried to explain that I have severe food allergies, and peanut butter is a healthy source of protein to fill me up when we travel. He couldn’t care less.

My know-it-all teenager ego came in when I said, “Look, my dad’s a pilot, why would I be a threat with peanut butter? It hasn’t even been opened yet!”

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He said we could have checked it, to which I replied, nearly simultaneously with my mom, “Well I [she] can’t exactly eat it if it’s in the belly of the plane now can I [she]?” Meanwhile, my dad and brother acted like they didn’t know us.

Overcoming the struggle: Again, plan ahead. Check the TSA list of prohibited items before you start packing. The below table is pulled from the TSA website. Guess which column peanut butter falls under:

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3. Missing out on the local cuisine.

Jim Gaffigan summed up the typical American vacation perfectly:

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Especially from the perspective of someone with food allergies, it feels like everyone is always eating on vacation. We just have to try this place that got great Yelp reviews. Such and such has the world’s best mac and cheese, I saw it on the food channel. All the locals recommend this steakhouse. Aw, what a cute village bakery! 

We even use the “Well, I’m on vacation” excuse to gorge ourselves. Hopefully, if you’re anything like my friends and family, you actually do things while on vacation – other than eating.

Overcoming the struggle: Focus on those non-food related activities. Remember that water slide that led you into a shark tank? Climbing those stairs was awful but the view of the waterfalls was so worth it. I was there when you first stepped foot into the ocean! I’ll let you in on a little secret: These are the type of memories worth having, anyway.

If you don’t have food allergies and are traveling with someone who does, just let them do their thing. Don’t ask them if they’re sure they don’t want to try a bite. Don’t ask them if they’ve eaten before you go out. Don’t ask them if they’re sure that the hotel utensils are clean. If you’re a parent of a young child, however, by all means, make sure your kid with food allergies is staying safe! Just take it from me, when your kids are on their own, surviving college or post-grad life, let them make their own decisions.

Now don’t get me wrong; I’m not at all trying to deter anyone with food allergies from traveling. None of the above struggles is a good enough reason to not travel. In the grand scheme of things, traveling and seeing new sights and spending time with loved ones seriously outweighs the struggles of packing, planning ahead, and slapping a smile on your face as you eat a turkey sandwich while everyone else dips their baked crab legs in butter – or however that works.

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America’s First Food-allergy Friendly Food Pantry

I’ve always wondered if I’d be able to survive if I wasn’t financially able to buy my own food. My volleyball team in college even joked that if I was a peasant in the Middle Ages I’d be screwed: I couldn’t beg, milk a cow on a farm, eat bread or cheese or nuts; I wasn’t strong or big enough to be a knight or defend myself; and I’d probably be sacrificed during a drought. (I’m sure something in there is historically inaccurate. None of us was a history major.)

All joking aside, in today’s world this is a harsh reality for families and people with food allergies who don’t have the means to purchase their groceries. Even if they have the means to buy the cheaper off-brand products, many can’t afford to shop at stores like Whole Foods or in the expensive “health food” and “gluten-free” aisle at the local store, which is often where you’ll find the nut-free cookies and gluten-free pancake mix.

That was the case for a family featured in a recent news article by NBC’s King5 Western Washington’s news about a new food-allergy-friendly food pantry.

“While under normal circumstances the Demoures and families like them wouldn’t need help from a food pantry, but the rising costs of allergen-free foods means they have few other options.”

Food Equality Initiative (FEI) is creating opportunities for low income families with food allergies and Celiac disease. Enter ReNewed Health, America’s first allergy-friendly food pantry located in Overland Park, Kansas. In just a year, it has distributed more than 12,350 pounds of allergy-friendly food.

As I read this article, one thing that came to mind was – in addition to the limited resources these people have – their limited time. I’m imagining a single mom who’s working two jobs to feed her and her three children, and I’m comparing how long it takes me, someone who’s privileged with time, money, and only one mouth to feed, to find milk-free bread at the grocery store to how long it would take this woman. She needs to carefully read each ingredient, because not all brands bold the common food allergens at the end of an ingredient list, and then she needs to check to see if there’s no disclaimer saying the product was manufactured in a facility with milk, all while keeping an eye on her children and her grocery cart.

Now I’d like to make one thing clear: These are people with real dietary restrictions who can’t afford the food they are able to physically eat. This isn’t a matter involving recent-graduate hipsters who can’t afford to keep up their vegan diets.

So I salute FEI and their efforts to help the food allergy community and promote a little more peace and love in our country.

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A Cure for Food Allergies on the Horizon?

Before we have any hope for a food allergy cure, we need to understand why food allergies exist in the first place. Some studies say genetics play a role. Other claims involve genetically engineered foods. There’s even a Hygiene Theory that attributes the rise of food allergies to changes in our environment and society  (cleaner water, cleaner dishes, the emphasis on hand sanitizer, antibiotics ) have resulted in changes in our immune systems. But the truth is, there is no scientific or medical conclusion as to why food allergies exist and why the number is rising (approximately 50 percent increase between 1997 and 2011).

Well now we’ve got some of the world’s most brilliant minds on the case.

Researchers from the Broad Institute of MIT and Harvard, its partner institutions and Yale School of Medicine are launching an initiative to tackle the science of food allergies.

According to a Broad Institute news release on Wednesday, the Food Allergy Science Initiative (FASI) “aims to accelerate the pace of discovery in this field and enable the development of new diagnostics and treatments through a coordinated effort that brings together specialists from a variety of disciplines including immunology, gastroenterology, computational biology, molecular biology, and bioengineering to answer fundamental questions pertaining to food allergy.”

In Layman’s terms, I could actually potentially maybe have a shot at being able to eat a slice of cheese pizza in my lifetime. Now I’m a pretty cynical person when it comes to food allergies, but I can’t help the pep in my step after learning just who is involved in this crusade.

Current participants include researchers from Yale School of Medicine, Brigham and Women’s Hospital (BWH), Harvard Medical School (HMS), Massachusetts General Hospital (MGH), and MIT, in addition to the Broad. Along with Medzhitov and Regev, FASI’s scientific leadership includes Vijay Kuchroo (Broad, HMS, BWH); J. Christopher Love (Broad, MIT); Wayne Shreffler (MGH, HMS); and Ramnik Xavier (Broad, MGH, MIT, HMS).

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What’s equally, if not more, impressive is how FASI came to beLesley Solomon had to take her 6-year-old son to the hospital when he suffered an anaphylactic reaction during a food challenge in his doctor’s office. Not long after the terrifying incident, Lesley took action and found three other food allergy moms to raise $10 million for the seed funding of FASI. (And here I am just composing weekly rants on the subject.)

You can bet your ass I’ll be keeping a sharp eye out for any breakthroughs and updates!

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The EpiPen Might Save My Life, But Not Before it Breaks My Bank

Epinephrine is the only treatment for an anaphylactic reaction. It is only available through a prescription. It costs way too much, and the price only continues to rise.

I recently had to refill my yearly EpiPen prescription. What a fun time of year, especially since I’ve been paying for everything out of my own pocket, no longer constrained by my parents’ wallets. So when my doctor whipped out this beautiful, $0 copay, My EpiPen Savings CardTM, I couldn’t wait to get to the pharmacy. But when the pharmacist rang up my EpiPen prescription, his brow furrowed. He said, “That can’t be right,” and told me to hang tight while he called my insurance company. Apparently my insurance policy’s full premium wasn’t paid, so they could not honor the savings card to its full extent.

When I asked the pharmacist why the price was so high these days, he said it’s likely because Sanofi US recalled all Auvi‑Q® epinephrine devices – the only major competitor to the EpiPen – so the EpiPen manufacturer can basically charge whatever they want.

After the $0 copay card took off a little over $100, the grand total of one EpiPen box containing two EpiPens (keep in mind, having two EpiPens is recommended in case one isn’t enough in the event of a reaction, so even though there were two provided, they could turn out to be just for a one-time reaction) was $231.89.

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Personally, I’ve never had to use my EpiPen since I’m a pro at playing keepaway from milk and tree nuts. But I can’t not have an epinephrine injector on my person at all times – you never know what could happen. So, I see my purchase as, essentially, life insurance. When my EpiPen expires, I will shoot $231.89 into an old orange before disposing the injector.

But what about the people who do need to use their EpiPens before they expire, then need to purchase more? What about the people who can’t afford to pay hundreds on something that they might need, but it happens to be something that would save their lives?

Making people with food allergies pay hundreds for something that could save our lives, when there is no other product for us to choose from, is exploitation.

Bernstein Research analyst Ronny Gal, in an an article by CNBC, said, “[Pharmaceutical companies] take drugs that have largely been underpriced before—or that’s the way they’d call it… They buy a drug that does not have good alternatives and they raise the price sky-high. And because it’s very hard to say no to those patients; because there’s no alternative, people cover this.”

Of Gal’s three examples of this, one was Mylan’s EpiPen.

The CBS article continued to explain that the EpiPen price, according to data from Evercore ISI, increased 27 percent a year, on average, from 2011 to 2015, to more than $300 each dose. In May 2016 alone, Mylan increased the EpiPen price by 15 percent.

Meanwhile, prescriptions for EpiPen rose 9.5 percent, on average, each year from 2011 to 2014, according to data from IMS Health. Sales in that time, the data show, rose an average of 42 percent a year, to more than $1 billion.

Cha-ching for Mylan.

The EpiPen brand is synonymous with allergies, but it’s not the EpiPen that we need. We need an epinephrine injector to hold us over until we can make it to a hospital. I’ve been an EpiPen customer for 24 years, and I don’t even want to attempt to do the math on how much my family and I have spent on unused EpiPens.

What we need is a competitive market. And when there are simply no competitors, drug companies need to have limits. The CBS article also quoted a letter that Democrats wrote to House Committee on Oversight and Government Reform, which I think sums up my point perfectly:

“We believe it is critical to hold drug companies to account when they engage in a business strategy of buying old neglected drugs and turning them into high-priced ‘specialty’ drugs.”

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Am I Awkward Because of My Food Allergies?

I’ve always wondered if not being able to “normally” eat out has made me more of an awkward person. How can these two things possibly correlate? Hear me out.

We as a society don’t just eat to survive — it’s usually done socially. For someone without food allergies, these events don’t require a second thought. But for people with food allergies, there’s quite a bit of planning and strategy that goes into it. What am I going to eat? Where am I going to eat it? When am I going to eat? Most of the meals in my lifetime have been for the sole purpose of being full so I don’t get hungry once we’re at the restaurant or party or gala or whatever it is that involves food. Even if I wasn’t hungry before a grandparent’s dinner in the city, my parents coaxed me to eat something or else I’d be hungry later.

Eating is often something I cross off a checklist before the main event.

When it comes to eating out, I basically have three options: 1. Try something off the menu 2. Bring my own food or 3. Don’t eat out. And each of these scenarios comes with its own level of awkwardness.

Get ready because there’s a way too much thought that went into this.

Trying to Eat Off the Menu

I’ve tried this only a handful of times in my life. I’d carefully explain the severity of my food allergies to the server — who, looking back, was just some teenager herself trying to make some extra cash and couldn’t (and shouldn’t) have been trusted with my life.

So not only have I now stressed out the server and put extra strain on the kitchen staff, but I’m also feeling anxious myself. I’m literally putting my life into strangers’ hands. If the kitchen’s utensils, stove tops, mixing bowls, or anything of that nature aren’t clean, I could get sick. If someone sprinkles my plain salad with croutons on accident and then picks them out, I will get sick.

I’ve pulled off eating out before without an itch, but I wasn’t always so lucky. (I almost died in Boston. But that’s a story for another blog post.) The way I figure, when I’m eating out, it’s usually during some special occasion, right? So why would I risk ruining it by having a reaction? It’s easier for me, for the restaurant and for my peers to just not have to worry about it.

The awkwardness at hand if I eat out: Coming off as high-maintenance; having to be stern (bitchy) when a server doesn’t take me seriously; potentially having a reaction and having to leave early or having to call an ambulance to the restaurant.

Bringing My Own Food

Sometimes I bring a sandwich or something simple (like something that doesn’t need to be microwaved or doesn’t need a plate; I want to draw as little as attention to myself as possible). I have two problems with this method, though.

  1. Have you ever tried eating a cold turkey sandwich while those around you dined on baked lobster?
  1. The staff doesn’t always allow outside food.

I once brought in a sandwich to a restaurant and the server said I couldn’t eat that in there. I told her I can’t eat anything they serve unless they can guarantee I won’t have a reaction. My friends backed me up. She apologized but said it’s their policy: No outside food. So I smiled through clenched teeth, tucked my sandwich back into my purse, and would finish it during the car ride home. So much for not drawing attention to myself.

I’ve also received comments from servers like, “Oh, is our food not good enough for you?” One of the servers at Dick’s Last Resort accused me of being anorexic when I was 14, but it was his job to be a dick, anyway, I suppose. My point is, again, it’s not always worth it.

The awkwardness at hand if I bring food: Having to act like my sandwich is the best damn sandwich I’ve ever had when I get the pitied “How’s your sandwich?” from my table mates; being scolded for bringing in outside food, then fighting about it with staff; having a loud grumbling tummy while everyone else is eating.

Not Eating Out

Simply not eating out is my preferred strategy. I don’t have to stress out the kitchen staff or stress myself out — it’s like a win-win.

But, here comes the awkward part: This means that I can make those around me feel bad or uncomfortable. I had one teammate who even refused to sit at the same table as me every team meal because she felt so bad about eating in front of someone who wasn’t. When I turned 21 it got easier; at least I could drink! Although I found out the hard way that with my petite build and empty stomach, I had to pace myself.

Also, I have to master a two-part strategy that I call “The Art of Unconventional Social Conventions.” Part 1: How should I act when everyone else is eating? It typically involves an inner dialogue that goes something like this:

Ok, Lauren, don’t talk too much when the food comes. Don’t ask questions when their mouths are full. Let them enjoy their meals. Crap, now there’s an awkward silence and I’m just sitting here, the only one without a mouth full of food. Take a sip of your drink. Still silence. Take another sip. But wait no you don’t want to get drunk these are your coworkers for Chrissake.

Part 2: What do I do when the bill comes? If I only had a drink, obviously I’ll pay for that. But a lot of times people like to split it up evenly. In my experience, someone was brave and kind enough to say “Well Lauren only spent like $7.” But in some cases I had to actually debate with someone as to why I shouldn’t have to spend $30 on a bill where I only spent $5.

The awkwardness at hand if I don’t eat: Talking too much; talking too little; getting too drunk; acting like a cheapskate.

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So, am I more awkward because of my food allergies? Probs. But at the end of the day, I can’t control what people at the table will think of me or if they’ll feel sorry for me, and that’s okay.

My advice to anyone with food allergies: Just be there. Don’t let your food allergies hold you back from eating out because you’re afraid of the social implications.

My advice to anyone without food allergies: Just let it be. Let us make our own decision and don’t push us to try something we’re not comfortable trying. Don’t give us a reason to make a situation awkward by saying things like, “So is it hard for you not eating when everyone else is?” If you were dining with someone in a wheelchair, would you ask them if it’s hard not being able to eat at the high tables? Hell no. So just let it be what it is.

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3 Tips for Dating Someone with Food Allergies

Imagine you’re finishing up a date with someone who has food allergies, and you two are just about to say goodnight after a perfect summer evening together. You lean in for your first kiss — but wait. If you’re not thinking about what you recently ate, you should be. The last thing you want is to end the night in the hospital or later find out that you left your date with puffy, itchy lips (or tongue, too, if you really got after it).

Maybe you’re reading this because you’re prepping for a date with someone with food allergies. Or maybe you’re just curious. There are 15 million Americans with food allergies, and the number is growing every year. Odds are you’ll date someone with food allergies at least once in your lifetime. So take it from someone with severe food allergies and years of dating experience: Here are the 3 main things you need to know.

1. Never Surprise Them with Dinner Plans

Don’t make reservations at a restaurant or invite your date to your place for dinner without asking them first. Even if they already told you about their food allergies, you don’t always know the severity. They might have even downplayed it at an attempt to not scare you off right away (I know I’m definitely guilty of that).

Food doesn’t even need to be involved right off the bat. Dazzle your date with some out-of-the-box date ideas. Take an art class, go the zoo or a museum, get tickets for a local concert. Or, ask what they’d like to do. You can say something like, “I know you have food allergies; is there anywhere you’d prefer to go for dinner? Or would you rather do something else that doesn’t involve food?”

After a few dates, a great option is to invite your date over to your place to make dinner together. This lets your date show you how they make their meals, plus gives you a hands-on chance to understand what it takes to keep them safe. What ingredients can you not use? Do you have to clean all utensils and pans, first? What’s a substitute for milk? Turn on some music, break out the wine and let your date be your guide.

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2. Listen to Learn, Not to Respond

Of course, on any date you should be off your phone and attentively listening. But when it comes to someone with food allergies, they’ll need your full focus. It could mean their life.

To get the ball rolling, ask an open-ended questions like, “Can you tell me about your food allergies and what I should know?” They’ll tell you what you need to know, without feeling like you’ve invaded their privacy or asked the wrong questions.

Also ask what to do in an emergency. This not only shows your date that you care and are interested in them, but also helps you prepare for the worst. How do you use their EpiPen and where do they keep it? What do you do in case they have a reaction when they’re with you? When you’re on a date, even if it doesn’t involve any food, you never know if some kid will come along and throw his ice cream everywhere, or if a woman on the train will spill her bag of mixed nuts on your date.

And, for the love of God, do not, I repeat, do NOT bring up your own, or anyone else’s, dietary preferences. Unless you also have food allergies, nothing about your diet can compare to what your date has to deal with on a daily basis. So fight the urge to add your two cents. While they may be polite about it, your date will most likely be turned off when you bring up a classmate you once knew who had food allergies. Or how one time you thought you were allergic to milk, but it just went bad and you got sick after drinking it. I mean what are we supposed to say to that? Are you trying to tell us that you can relate? Because you can’t. So don’t listen to respond. Listen to learn.

Bonus tip: Don’t make jokes. I’ll explain with a personal story.

I once went on a date with a guy to go out for drinks. When we got there, he ended up ordering food. He apologized and said he was starving, and I told him to go ahead. I didn’t want him to not eat just because I wasn’t eating, but I still couldn’t help but be turned off by it. Like he really couldn’t have eaten before? Anyway, he was looking at the menu, and, I shit you not, here’s what he said:

“So, do you have to be careful about not pissing off boyfriends or roommates? Like, it’d be so easy to poison and kill you, haha.”

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My point is, even if you think you’re being funny and harmless and breaking the ice, jokes about dying from food allergies are just poor taste. Your date has barely gotten to know you and right off the bat you’re downplaying the reality that their food allergies could in fact kill them? Think it through.

3. Have “The Talk”

For people with food allergies, “the talk” needs to be tweaked a bit. You both know about the birds and the bees, but what you may not know is how long to wait until you can kiss your date after eating something their allergic to. Research shows that, for peanut allergies, you should wait 4.5 hours to kiss. Every person’s allergies are different, so just ask.

You’re probably thinking, Lauren, there’s no way I’m doing that; it’s too awkward. I feel you, but it’s a hell of a lot less awkward to ask first instead of later trying to explain to his or her parents at the hospital why they’re being treated because you blindfolded their son or daughter and used whip cream in the bedroom and, well, yeah.

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It’s important to understand that someone with food allergies isn’t trying to make your life difficult. We put a lot of trust in you when you ask us out. And if we think you’re worth the effort of explaining our food allergies to you, that’s a huge step in the right direction.

People with food allergies have learned to be extremely independent, so as long as you let your date handle their allergies their way and offer your support, you crazy kids just might have a shot.

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3 Comebacks to Food Allergy Bullies

First of all, if you haven’t seen this part of the Freaks & Geeks episode where Allan the bully sneaks peanuts onto Bill’s (who’s severely allergic to peanuts) sandwich during lunch, I highly recommend taking a few minutes to watch.

Now, I use the word “bullies” because “people who think they’re being funny or are just too curious or clueless” was too long for a title. I experienced this often in school, and even still today, for my allergies to milk and tree nuts.

I don’t believe they ever had malicious intent, like Allan. I think they were just under-educated on food allergies and over-curious. And who’s to blame them?

My younger cousin once asked, so what does your food allergy mean? I told him that if milk were to touch me, I’d get red itchy bumps all over, and if I drank it, I’d die. He seemed to ponder this for a moment, then next thing I knew he poured his glass of milk on top of my head. 

A few years later when I entered high school, I tried explaining my food allergies to a group of girls at lunch. One girl simply did not believe me. She looked at her bag of Cheetos then asked, “So if I were to touch you with a Cheeto, you’d just break out in hives?” Having a flashback to when I tried to logically explain my allergy to my cousin, I decided to go with humor this time. I replied, “Yes. I mean, you could find out for yourself, but then you’d have to explain to my biology teacher why I missed her class.” She rubbed the Cheeto on my leg. 

But in both cases, I ended up getting an apology with a side of a bouquet of flowers the very next day. My cousin said, “I’m sorry. I didn’t understand that you’d get red itchy bumps.” My classmate said, “I’m sorry, I seriously thought you were joking!”

It comes down to making your allergies a very real risk to the “bullies.” And the bullying doesn’t always come in the form of physical torment. In fact, most of the time, people just absent-mindedly say things without thinking about how it would make you feel.

So here are three of the top things people say that’s condescending to people with food allergies, and confident responses.

The skeptic: Come on, just try it. How bad could your reaction be, really?

You say: I could die. My throat could close up, I could lose consciousness, and then you’d have to inject my EpiPen with a giant needle into my thigh, call 911, and explain to the paramedics and my family how you pressured me to “just try it.”

The downer: Oh my GOD! How can you live without milk? I’d kill myself if I couldn’t drink milk. Your life must suck.

You say (with a smile): I love my life. And because I eat so healthy I’ll probably even out-live you!

The vapid: I totally understand your food allergy. I’m vegetarian.

You say: Oh, congratulations on your decision. Also, if you eat meat, will your throat close so that you can’t breathe? Could you die from eating a hamburger?

Unfortunately, there will be just plain mean people out there – kids and adults alike – that simply won’t get it, no matter how you respond. They’ll be manipulative, pressuring, or condescending. They’ll chase you down the halls with a peanut butter cookie or try to get you to have a reaction.

When extreme measures need to be taken, there is no shame in getting help: your HR department, your teacher, your parent/guardian, the bully’s parent/guardian. Consider showing them a video (like the one above) to visually show them what could happen. Explain the consequences to them if they continue to bully. There should be a zero-tolerance for any kind of bullying, especially when your life is at risk.

Food Allergy Research and Education (FARE) has great tips and a 30 second video for anti-bullying. Check out their page: Food Allergy Bullying: It’s Not a Joke.

Younger kids (or adults who really love Disney), build confidence with your food allergies. 

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