Celiac Disease Program

Celiac patient Marina Keegan, 17, answers teens' questions about celiac disease

Q:

My 8th grade class is going to Washington D.C. for a week this spring. How do I enjoy it and not make a big deal about the food? We will be taking the train for like 8-10 hours each way and I know I can't eat anything there. Then when we get to Washington they have all these class dinners with pasta and pizza nights (as usual) I don't want to make a scene at all but my mom thinks I'm going to starve if she doesn't make a fuss. What can I get to eat for breakfast if they just go to a donut shop? What can I do for lunch when we are touring around the city? I want to be excited but I am just kind of stressing out about the whole thing.

Sincerely,
Hope

A:

First of all, don't let food get in the way of you being excited for your trip! I've been on plenty of school trips, including one to Washington DC for a week like your school, and have never had a problem. The key to planning for these events is that the more you do in advance the less you have to worry or stress about while you're on the trip, leaving you free to enjoy yourself!

• The first thing you should do is contact the teacher or coach who is in charge of the event. These people are very open about dietary needs and usually have a bunch of kids approach them for peanut allergies, being a vegetarian etc. The key to doing this is to make sure that they understand that you can handle the situation yourself to avoid those awkward and embarrassing moments when the teacher screams across the whole train to make sure you're getting enough to eat. Simply ask the teacher for a food plan and/or a list of the restaurants the group will be going to. (Believe me they have all this stuff pre-planned.)
• Once you have this list you can call the restaurants to find out what exactly you can eat in advance, to avoid even having to bring it up at restaurants. (You can even have your mom or dad do this step if you're too lazy, like me!) If your group is staying at a facility like a camp or place with a chef, get his number and contact him in advance! Last year I went on a week long trip to Florida with my lacrosse team and groaned when I discovered we would be eating at this cafeteria-style food court for all our meals. However, after coming in contact with the chef, he informed me he dealt with celiacs all the time and I even ended up being served things like gluten- free pasta and macaroni and cheese because he had them in stock.
• In terms of breakfast, most group trips usually serve things like cereal or go to a bagel place because it's inexpensive. What I have done in the past is brought zip lock bags of gluten- free cereal or muffins and kept them in my room. I would usually eat some cereal in the room before we left for the morning, thus avoiding having to deal with at least one meal of the day. Then at the group breakfast grab a banana and some orange juice, you many even get lucky and have the opportunity to order eggs.
• I also found it helpful to bring some snacks along, like crackers and a jar of peanut butter or some other carbs to keep you energized (especially on a sports trip) in case you get stuck eating your 12th chicken caesar salad ( crouton-less of course) at the 12th Italian restaurant.
• Finally, in terms of the train ride, I remember on my trip, not one kid ate the food they provided. Most people packed lunches and brought TONS of junky snacks and candy, so I wouldn't be worried about that aspect.

I know it may be scary, especially if you're newly diagnosed, to fathom traveling by yourself and having to deal with food. The only advice I can give you is to relax and stop stressing out. Unless you're visiting a culinary school (I highly doubt you are, haha) the reason that your schools are taking these trips is not for the food. Put aside the embarrassment you might feel in maybe eating something different because you'll be surprised how little people will even notice or mind what you're eating.

One last piece of advice is not to take risks. Although you might be tempted to just trust something a cafeteria or restaurant is serving to simplify things, it is not worth ruining your trip by being sick the whole time. And most importantly, HAVE FUN! Don't let celiac disease control you, take it in your stride. After all, as I always say...It's just food.

Sincerely,
Marina

Q:

I recently moved to Massachusetts from Florida. I am going into the ninth grade. There are so many changes in my life right now. On top of it all, I recently found out I have celiac disease. It's already going to be awkward meeting new people; now I have this weird diet I have to be on. I don't want my diet to be the way people know who the new kid on the block is! It's hard enough making new friends, how will I go out with new friends and avoid bringing up my diet? Especially when everyone wants to meet for pizza! I want them to know me for me, not my diet! This all makes me so mad, this stupid diet! What would you do?

Ramona E.

A:

First of all, don't worry at all about having your diet be the way people know you. I just started a new school last year, and I can tell you for a fact I'm not known as 'the girl with the weird diet.' There's no point in hiding the fact that you can't eat certain foods, because sooner or later your friends will start to wonder what's up.

My friends think it's interesting that I am a celiac and personally I find it kind of amusing. You have to laugh at yourself!! If you sit there and moan about not being able to eat pizza the whole time you're out with your friends, you're only hurting yourself. Make a joke about having to order different food at a restaurant, or laugh about the fact that you eat special bread.

The more confident and easy-going you act about your diet, the more your friends will begin to think it's not a big deal at all.

When I go out to dinner with my friends I'll find something on the menu I can eat, like a chicken Caesar salad without the croutons, or fish with a baked potato. Just explain to the waiter what you can't eat. You don't have to scream it across the table, just tell him or her to check to see if something contains flour or gluten when you order. It's not worth being sick by eating something you're not completely sure is safe.

If you're going to a Chinese restaurant or somewhere where you're not sure what you'll be able to have, call in advance. I find this an easy way to deal with going out if you're embarrassed about talking in public to a chef or manager. Simply look up the number of the restaurant and ask what on the menu would be gluten-free, this way, when you arrive with your friends you can casually order without any hassle.

As for pizza restaurants, they often offer salads, and you'll be surprised to find how many teenage girls order a salad instead of pizza regardless of their dietary restrictions. If you're worried about being hungry, then eat something before you go out, make yourself a gluten-free pizza, or eat a sandwich before you go.

At this point in my life, when I'm asked why I am eating something different, it is my friends who jump up and are eager to show off their knowledge and explain exactly what being a celiac means. Honestly, would you care if one of your friends couldn't eat peanuts or something else? Of course not. Let face it, there are a lot worse conditions out there than not being able to eat certain types of bread. Don't let celiac disease control your life, but rather take it in your stride and learn to accept that it's just part of who you are. And after all, it's just food.

Sincerely,
Marina

Q:

I'm always being asked questions about celiac disease and it's driving me crazy! Some people are just so ignorant. Do you ever get asked questions and how do you respond to them?

Sincerely,
Juliette

A:

All the time! Here are my Top 10 Hilarious Celiac Questions:

Q:

A lot of time the food I'm eating looks different from what everyone else is eating. Especially when I bring my lunch when other kids buy theirs. What should I do when kids make fun of me for this?

Sarah

A:

No one likes getting made fun of, especially when it's for something they might already feel sensitive about. That's why my best advice for you is to just shrug these people off. Anyone who is making fun of you for eating something different probably just doesn't understand why you get different food in a cafeteria, or why your bread may look a little different.

So the important thing to do is simply explain to them that you're allergic to certain foods. There's no need to go into all the tiny details about having celiac disease or what happens when you eat foods with gluten, because it can get annoying to have to keep repeating this over and over again.

A little line like "Oh, my bread is different because I'm allergic to certain grains" or "This is just rice bread, and yours is made of wheat" are enough to get someone to understand and quiet down. You'll actually be surprised to see how many people are really interested in the answers you give them!

Most of the time people will nod and respond that they know someone else who's allergic to types of flour, or that they're allergic to something themselves, like peanuts or dairy. At this point in my life, my friends are the one to pipe up and answer any questions about why I'm eating different foods.

For example, during the summers I go to sleepover camp and the staff in the dining hall gives me different food to eat, so naturally I get a lot of questions. However, when someone asks why my food might look different from what they're eating, it's almost always one of my friends who chimes in with an answer, proud to show off their knowledge about my being a celiac. My friends even like my food better at camp, because while they might get defrosted packaged breaded chicken for a sandwich, I'll get real grilled chicken for mine!

If people continue to mock you just because you're eating different foods, maybe they're not the best people to hang out with. The more casual and easy-going you are about eating different things, the more other people won't notice a difference.

When I was younger I used to be embarrassed when my mom would ask to talk to a chef at a restaurant, or I would try to hide the fact that my food might look a little different at camp or at school. But now that I'm older I realize that the only person who really cared was me! Other people are almost always understanding and willing to help, and food allergies are becoming more and more common every day. Just remember, everyone has something that makes them unique and different, and that's no reason to get made fun of. And after all, as I always say... food is just food.

Sincerely,
Marina

Q:

Almost every single day I get asked the same questions over and over again like, "What's Celiac Disease?" or "What happens when you eat bread again?' or "How do you get it?" I'm just so sick of answering all theses questions all the time, not only do I repeat myself day after day, but it can be embarrassing to answer such personal questions in public. What should I do?

Adam

A:

Just say this:

Celiac Rap

Yo, I've got this thing called celiac disease,
It means I can't just eat anything I please.
You might have heard about it on the street,
But wheat, rye, oats and barley I can't eat.

I'm just pretty sick of people always askin'
So sit right back and listen to me rappin'
It's the most gangsta intolerance , I'd say
Peanuts or milk just aren't as cool today.

If I have some gluten, even just a lick,
My stomach starts to feel very very sick
Then my little villi, they begin to die,
Yo I get pretty nauseous, and that would be why.

you can order special foods and it's not even illegal
But if you decide to cheat, you'll end up looking like Smeagol,
They make wheat-free foods for me and my homies,
They even have rice cookies, and safe macaronis.

So dawg, there's not much more to say or do
Everyone wants celiac, playa, even you.

Sincerely,
Marina