Traveling Through the World (and Life) with Food Allergies

Traveling with food allergies can be very scary and life threatening, especially when others don’t understand the risks associated with cross-contamination or one little ingredient sneaking into a recipe. Many associate food allergies with someone getting a rash and unless they have a family member or themselves suffer from a life threatening food allergy they just don’t see the big deal.

Food allergies can easily put the allergy sufferer into anaphylaxis requiring IMMEDIATE medical treatment. Traveling away from home can sometimes be frustrating and limited when it comes to eating ~ and yes, dangerous, too.

What constitutes traveling with allergies? Is it a weekend trip? Is it if you travel by plane? The truth is any time you leave your house you are traveling with food allergies. Anytime you may have to eat food you didn’t make yourself or wasn’t made by a trusted family member or friend, you are traveling with allergies.

Imagine for a moment that you are on a break from work and you decide to get your oil changed. It takes longer than you thought and you no longer have time to go home for lunch, what do you do? Non-allergy sufferers would most likely stop at some form of fast food (which is a totally different issue in itself).

It’s not a great choice but it’s the choice you have. Now imagine you can’t eat certain foods. Many of the most common allergens for example ( eggs, soy, peanuts, tree nuts, wheat, milk, shellfish) make fast food stops out of the question. If you’re lucky there might be a Chipotle (a place I can eat at) around but you can’t guarantee that. Any time I leave my home, I take food with me. I prepare several small meals that are ready to go at all times. I carry my own snacks. Insulated lunch bags are a staple for me. 

Food allergies are not life choices. These are legitimate chronic health issues and should be taken very seriously. Everything needs to be planned. Friends are going out ~ where are they going ~ have you been there before ~ can you eat there? These are all things that need to be considered everyday and the reason everyday needs to be prepared for as if it’s a travel day.

Vacationing with food allergies can be a nightmare and over time I have found some of the best spots to vacation. Spots (such as Disney properties) that understand the importance of food allergy dining and go out of their way to accommodate allergy sufferers ~ even with buffets (which are a cross contamination nightmare for someone with multiple food allergies).

ALWAYS BE PREPARED

Sounds like common sense to most of us. However, you would be greatly surprised by the number of allergy sufferers that leave home totally, completely, positively, 100% unprepared.

Having a plan is the best way to stay safe when you are traveling with food allergies (and remember ~ anytime you leave home, you are traveling. 

The most important part of the plan is to never leave home without your auto-injector. Not having the medication you need when you need it is a huge mistake that people make. I get it; they’re huge and bulky and totally uncool. In case you’re wondering anaphylaxis is also totally uncool (and can be deadly). 

The second part is plan your meals ahead of time. If you know where you will be dining, look at menus on-line, call and talk to chefs, and make reservations. Disney (special dietary requests) is a great resource if you will be visiting a Disney property. Allergies are taken very seriously and it’s probably the easiest place for the food allergic to vacation and eat.

The third and final plan is to have an emergency back up. Always keeps a safe quick food with you. It could be an Enjoy Life bar that you keep in your EpiPen case, or a some Sunbutter and an apple. Always have a quick snack just in case. Keep your auto-injector some place that is easily accessible to anyone that is with you.

Quick Review

1. Never leave your house without your auto-injector – if you can remember your cell phone and keys – you can remember this!
2. Plan your meals ahead of time
3. Always keep an emergency backup snack

Manage Your Allergies

The single most important thing that needs to be remembered is how we, as allergic people, manage our allergies at home and when we travel.

If I go out to eat tomorrow, it is my responsibility to remain allergy and reaction free. If I go to someone’s house, or a dinner party, it is my responsibility to check ingredients not the host/hostess’s responsibility to label the brownies they made (this obviously doesn’t apply to packaged food since the FDA has that covered). 

As an allergy community we have become very reliant on the rest of the world doing the checking and monitoring for us. Its great to have friends and family that understand and help us, but it isn’t the job of the rest of the world to keep us safe.

A large percentage of the allergy community is made up of children. I wholeheartedly understand there is a certain level for learning curve when kids are involved, however, we are doing them a very dangerous disservice by not teaching them safety regarding their food allergies as early as possible. We want to remove peanuts from schools, and remove foods from classrooms but no one is teaching the child ~ “when in doubt, go without” anymore.

Many expect the world to change and accommodate their own or their child’s allergies. News Flash: It ain’t gonna happen. It is your job to protect yourself and/or your child. You are doing your child a terrible disservice if you are teaching him/her that the world has to change to accommodate them. Teach them to live in the world with their allergies.

Every year we read more and more stories about a teen who died of anaphylaxis and each story has a very similar theme. They ate an unwrapped food and had a reaction, they didn’t have their Epipen with them. They didn’t ask anyone about ingredients and paid a terrible price. Many are trying to make the answer to this problem be that all unwrapped food be labelled.

If we protect ourselves and our children with early lessons of allergy management, foods do not need to be labeled. I can’t help but think that these are the kids who were never taught to manage their allergy for themselves. It a very scary, very tragic problem in my eyes.

Here’s the thing, if you are are old enough to know right from wrong, old enough to know not to go in a car with a stranger, old enough to look both ways before you cross the street, than you are old enough to know you don’t eat anything your parents didn’t give you or what you can and can’t eat.

If you can read, you can read a label and be taught what to look for on that label. If you can remember your phone or iPad, you can remember to take your Epipen. My niece is 11 has recognized the signs of anaphylaxis on me since she’s been 6 or 7, so it isn’t outlandish to think a child with an allergy can make these choices on their own.

Mistakes happen. I’m an adult and I screw up sometimes, but if we make an effort to help ourselves and teach our children to monitor and take care of themselves from an early age, we will save lives in the long run.

I hear regularly that we don’t want our kids to feel left out. We don’t want them to be different. News flash! WE ARE DIFFERENT, and that’s OK. The sooner a child can find comfort in the fact that they have a different set of circumstances, the safer they will be. A child that accepts their allergy is more likely to be o.k. with carrying and using their Epipen and will become confident in declining a food they can’t eat or saying to an adult, “No, thank you. I can only eat foods my mom has given me. I have allergies”.

Train Your People

Lack of knowledge and information is the most dangerous thing for an allergic person. If the people around you do not understand allergies and anaphylaxis, things can get very dangerous very quickly. 

There are a few things you can do to help everyone around you better understand.

Cross contamination is a huge thing. Your friends and family need to know you don’t, you can’t, you will not, share food. If you have a specific toaster, cutting board, product, etc., it needs to be respected. My family keeps a separate everything for me. I have my own butter, my own toaster, my own cutting board.

My food is kept sealed, labeled and in a refrigerator in the garage among many others things, because the worse of my allergies is wheat and we worry about cross-contamination. Anaphylaxis because of cross contamination can happen because of the tiniest little crumb. Because someone put their knife that buttered their bread in my butter.

Sounds like common sense doesn’t it? Easy because you’re in charge. 99% of the time that’s true. You can control what happens for your allergy sufferer in your own home. 

Enter the dinner party. The huge family gathering. The neighbors over for a meal or a party. Boom ~ cross contamination can happen in a split second and it has in my house. It happens so quickly even with the most careful of families. No matter how careful we are, no matter how much we prepare, when “outsiders” (non-allergy family and friends) come into the mix ~ accidents happen.

Unfortunately those accidents can be life-threatening. When we have large gatherings now, I no longer sit at the main table. I have chosen to sit at another smaller table (usually with my niece) so there is no risk of anyone using the wrong spoon, the wrong butter, the wrong anything. It is usually done completely by accident in a split second. That’s all it takes.

Your friends and family should be able to ~ MUST be able to ~ recognize the signs of a reaction. As I have said before, my niece can, so it’s safe to assume an adult can. Your people MUST know where your auto-injectors are and how to use them. Epi-Pens come with trainers, USE THEM. If you’ve misplaced your trainer you can get a new one on the Epi-Pen website. Your people need to understand the seriousness of the situation and be able to react. If everyone is trained what to do ahead of time, they will react better and quicker when they are required to.

We are different and that’s O.K. Own it. The more comfortable you are with your situation, the more likely your people will be comfortable with your situation. If they are comfortable and knowledgeable, you will be safer in the long run.

Train your allergy suffering child to take care of themself out in the real world. It is not the world’s problem to take care of your child.

Because my food allergies are only a part of the allergies I suffer from, we also have other standard practices in place in our home:

• Installation by a licensed company of an air purification system on our HVAC systems
• We all use the same shampoo and soap – one that does not cause a reaction
• Everyone’s clothes are washed in a detergent that is safe for my skin
• We NEVER open windows during pollen season EVER.
• No one wears or sprays perfume or cologne in our house
• Our house is kept as dust free as possible. EVERYTHING and I mean EVERYTHING is vacuumed as often as possible. Every corner, every piece of furniture, every window, blind, shade, every mattress. The only curtains that are used are washable curtains that can be taken down and washed regularly.

TRAIN YOUR PEOPLE. Your people are your family, your friends, your co-workers. Anyone you deal with on a regular basis. The better they are trained, the safer you will be.

Keeping your allergy sufferer safe at home should be a top priority. Home is their safe haven. Home is where everyone should understand their allergies and their safety should be second nature to everyone that lives there.

Non-Allergic People Have No Clue

Non-allergic people have no clue what it’s like to live everyday in a state of worry.

“Oh, You shouldn’t really eat that anyway” or “so, just don’t eat it”

Every person who has ever told me I shouldn’t eat gluten anyway, eats gluten regularly. I’m not allergic to gluten, I’m allergic to wheat. Don’t minimize someone else’s problems because you don’t have an understanding of what is happening. As for the just don’t eat it comments, it’s just not always that simple.

In some cases it can be, if you are only allergic to one thing then it’s pretty simple. If you have multiple allergies, doing anything becomes a game of Russian roulette. One mistake on your part or someone else’s can have tragic consequences. Cross contamination is a nightmare!

Using the words “can’t” and “allergy” when neither are true

With the influx of fad diets removing things from people’s diets, “dairy” and “gluten” being the most common, there are a lot of people saying they can’t eat things. Let’s be clear – can’t means you are unable to eat it. With these diets you are able to eat these things but you are choosing not to and the mistake in verbiage creates a cry wolf situation.

Many restaurants don’t take allergies of diners as seriously as they once did because everyone “can’t” have gluten. What’s worse than that though is the people who say they are allergic when they are not. A little education note: gluten is not a recognized allergen, wheat is. No one is allergic to gluten. Yes, there are gluten intolerances but not gluten allergies. I remember a couple of years ago some friends were doing a 30 day challenge of sorts and someone had commented on a Facebook post that they could get a gluten free bun at Red Robin – “just tell your server you have an allergy.”

NOTE: Celiac is not an allergy. Although Celiac is real, it is not an allergy. 

People Who Just Don’t Care

I recently sat next to a grown women in a class who was eating mixed nuts. She was not careful at all and was less than classy in how she was eating them, so they were getting everywhere. I started to have a reaction and politely asked her if she could put them away since there were no free seat for me to move to. She told me it wasn’t her problem. She is right – it’s not. She has absolutely no requirement to maintain my safety, or to even be a decent person for that matter.

The easiest way for me to describe having chronic allergies (this is a little dramatic but you’ll get the point) is walking around with a bomb strapped to you. You spend everyday being extra careful not to set the bomb off, but one little mistake and BOOM!

Things that don’t directly effect you are hard to understand so ask questions if you are unsure, and be kind.

Don’t Be a Negative Nut

What kind of allergy sufferer or parent of an allergy sufferer are you? Are you a negative nut? A shellfish crab? A dairy drama queen? Or just an overall allergic alarmist! My biggest issue with a large portion of the allergy community is that they ARE extremely negative. I’m not sure if people are purposely so negative, or if they think their dramatics are helping with recognition and awareness in some way.

I should preface all of this by saying my medical issues are much deeper than allergies so I have a different outlook on what “bad” looks like.

Let’s ask ourselves some questions:

• Do you always put “life threatening” in front of allergies?
• Have you ever started an argument with family, friends or coworkers over their lunch?
• Are you trying to remove peanuts from the planet?
• Do you make such a fuss every time you go out to dinner that the entire restaurant knows you or your child has a food allergy?

If you answered yes to just one of these questions, I’m sorry to be the one to tell you, you’re negative. You don’t have to always point out that allergies can kill you or your child because the truth is – if you do your due diligence – your allergy won’t kill you.

I’m a “the glass is refillabe or almost full type of person. I like to assume I’m going to live. Cancer is life threatening.

The entire world does not need to stop because you or your child can’t eat things. I can’t eat wheat. My family and friends shouldn’t be banished into a doughnut free existence. I don’t argue and tell people that I work with that they can’t bring nuts to work. 

The peanuts, always with the peanuts! I agree, peanuts shouldn’t be on planes but myself, and the AAAA (American Academy of Allergy Asthma & Immunology) as well as 90% of school nurses polled, say removing them from school is a bad idea.

The real world is a place and you need to learn to live in it. You need to teach your child with food allergies to live in it. Stop suggesting every other kid switch to Sunbutter. Would you switch to Welch’s grape juice because someone was allergic to the sulfites in wine …. probably not.

If you are nice to servers and treat them with respect, they will help you. If you talk down to them, and treat them poorly, they are less likely to do so. I’ve worked in restaurants for over 10 years. You aren’t dealing with ignorant people. Speak calmly, be kind, everyone will benefit in the long run.

Do allergies suck? Yes. Can we all benefit from being more positive? Yes. I want kids to be ok with their allergies, to live long happy lives, to keep themselves safe.

They will never be able to do that if all the adults around them are angry and bitter. Your glass is half full and if the water runs out –  it’s refillable.

I am a firm believer in taking personal responsibility for managing your allergies. I don’t expect anyone to do anything for me. I do however expect a certain level of respect.

Chronic allergies such as food allergies, allergies to insects, and allergies to medication are an illness. They are not something that goes away, but they are not always visible. A person can’t look at me and tell I have a laundry list of allergies and people lack an understanding of things they can’t see. Unless you witness first hand someone having a reaction, you may never understand the severity of the issue.

Most people I know who have allergies have had people question them about it at least once. “Just eat an almond and see what happens”  “ You don’t look like you had a reaction,” or  “Prove it” are all things people foolishly say. People also like to mock and make fun while they eat their cupcakes, doughnuts, sandwiches, etc. If you have never been in a position where you can’t breath – good for you – because I can tell you it’s terrible. Have you ever thrown up while you can’t breath? Also terrible. Hives? Terrible. Swollen face, eyes, hands? Terrible.

Auto-injectors are the life-saver of anyone with allergies. They deliver a life saving dose of epinephrine whenever you use them. However, to use them you need to slam an inch long, 22 gauge needle into your leg. You guessed it, it’s terrible.

My point is not to get people to feel sorry for me. Feel sorry for kids with cancer, I require no sympathy. I go out of my way to not bring attention to the fact that I am terrified every time I eat food I didn’t cook, every time I’m outside in the summer months, or every time I’m around people who are eating. I’m afraid I’ll miss out on something or disappoint people if I have a reaction. I was afraid to eat at my brother’s wedding because I didn’t want to risk ruining it.

I hide these things because I don’t want attention for something that is just a fact of my life. I do, however, want people to understand no one chooses this. No one goes out of their way to live this way.

I choose to live my life everyday without asking people to make changes for me. I spend time outside, and go to restaurants and I’m afraid every step of the way.