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Top Tips for Teens with Celiac Disease

February 3, 2023

Teenagers eating pizza together, smiling.

Reach Beyond Celiac Ambassador Alyssa Megee spoke with fellow Ambassadors to compile a list of their top tips for teens who have been diagnosed with celiac disease. Read this article for their best advice on growing up with celiac disease!

The Transition to Eating Gluten-Free

It’s important to be patient and take the time to educate yourself about celiac disease when first diagnosed. The period after being diagnosed can be overwhelming, so it’s important to slow down and take one thing at a time.

There are a lot of great gluten-free foods out there, but don’t despair if you can’t find a gluten-free version of your favorite “gluten” food—instead, look up recipes and get creative in the kitchen! Trial and error is how you learn.

Going Out to Eat at Restaurants

You can still eat out with celiac disease; you just need to prepare more than before diagnosis. Always remember to ask questions and advocate for yourself. Trust me, you will not be the first person to ask about GF options!

  • If you haven’t eaten at the restaurant before, call ahead to ask about their allergy protocol and if they offer gluten-free options.
  • Never hesitate to ask for a gluten-free menu—even if they don’t have one, someone at the restaurant will tell you what foods are gluten-free.
  • Search online for restaurant reviews from others with celiac disease. The Find Me Gluten Free App is a popular choice for reviews, and it’s free.
  • If you have to go to a restaurant that you know you can’t eat at safely, then eat before you leave or bring a snack with you.
  • If you’re feeling awkward about not being able to eat, Ambassador Alexandra recommends you reassure and redirect. “First, reassure your friends that you’re okay and that this happens sometimes and it’s not their fault. Maybe even crack a funny joke about it; I always pull a Kourtney Kardashian and say, ‘I mean I can’t eat this but how exciting is it to smell it!’ Then, redirect the conversation to another topic to move on from it.”

It’s important to be able to hang out with your friends and dining out is part of that. Don’t let celiac disease hold you back!

Going to School

Eating gluten-free at school can be stressful since nobody wants to stick out or bring socially unacceptable food. The easiest thing to do is just bring a lunch from home, with foods like wraps, sandwiches, or salads. Other tips include:

  • Always keep gluten-free snacks in your locker or backpack.
  • Discuss celiac disease with a teacher or other staff member that will be around you so that they are aware of your medical needs.
  • Meet with the school nurse if you have more intense symptoms and make a game plan in case you experience a gluten reaction at school. You may want to look into 504 plans and IHPs if this sounds like you!

School Trips

  • Talk to the teacher or chaperone about food options before leaving to see if you are bringing your own food or if you are stopping at a restaurant on the way.
  • Always bring snacks!
  • If school needs proof of condition and medical needs, obtain one prior to going and share copies with the staff.
  • If you’re going on a longer trip, always research restaurants and grocery stores beforehand. This would be a good time to use the Find Me Gluten Free app!

International Travel

  • Pack your own snacks! Put half in your carry-on so you have easy access to food throughout your flight, and pack half in your checked back so you have food with you in the country you’re traveling to.
  • Before traveling, research GF options available in the airports.
  • Pack a doctor’s note, especially if you are bringing food through airport security.
  • If you are able to, book accommodations that have a kitchen/ette so you can make your own food in a safe space. For example, condos, villas, hotel suites, Airbnb, VRBO, etc.
  • After you arrive, visit a local grocery store and buy food items that can be made easily and eaten on-the-go.
  • If you can’t speak the main language in your destination city, print allergen cards and keep them on you at all times. A fellow Ambassador recommended

Going to a Friend’s House

  • Before you go over, talk to you friend about what food is available at their house. If there isn’t anything you can have, let them know that you will bring your own snacks.
  • If you frequently visit a certain friend, ask them if you could leave a few GF items at their house so you know you always have food there.
  • If you eat dinner at a friend’s house, bring up your concerns to the friend’s parents or guardians. Make sure that they are aware of cross-contact and know what needs to be done to ensure that doesn’t happen.
  • If your friend’s family orders takeout, see if you can help choose a restaurant that has GF options. Also, ask if you can plate your own dinner so it would decrease the risk of cross-contact.
  • At parties, friends may serve pizza, cake, etc. If you know about what they are serving beforehand, you can bring your own gluten-free versions.
  • Feel free to share your GF snacks and food with your friends! You may even find that people prefer some GF snacks over “regular” ones.

This may seem like a lot, and nobody ever wants to be different, but it’s important to take certain precautions so that you can be safe while having fun with friends.

How to Advocate for Yourself

The challenges that come with socializing when you have celiac disease can be difficult to manage. When you go out, whether it be with family or friends, finding a place that has GF food will always be on your mind. Many of us feel guilty when we know we are the reason the group can’t eat at a certain restaurant, or if others have to change plans because of our needs. Sometimes those emotions get the better of us, so much so that we want to put ourselves at risk to please others. But you have to be an advocate for yourself and speak up, because you shouldn’t have to put your health aside for others.

Surround yourself with people who are accommodating and who make sure you are taken care of. People who will advocate on your behalf can be extremely beneficial since there is someone else who understands celiac disease and will support you. Good advocates can be parents/guardians, siblings, friends, and other family members.

Talking to Unsupportive Individuals

It can be especially difficult to advocate for yourself when those around you are unsupportive. This conversation can be difficult to have, but there are a few ways to handle the situation person when someone is being rude or unsupportive.

  1. The first approach is a kind correction. When they make a comment, don’t reprimand them, but rather take the opportunity to correct and educate them. Sometimes people are just ignorant and uneducated about celiac disease, and they have no ill intentions. This is a great way to handle situations with those who are younger than you, your friends, and the elderly.
  2. The second way to go about the situation—and this only applies to an authority figure being unsupportive—is to get a third party involved. For example, if you’re having difficulties with a teacher or professor, then get a guidance counselor, school nurse, doctor, or anyone who can help you receive and manage your accommodations involved. Keep in mind that in the case of a teacher being unsupportive, you might only have that teacher for a short period of time, therefore, you won’t have to be around them for too long. This approach could also work for a family member that isn’t reacting well—get your parent or guardian involved to advocate for you.
  3. The third and final strategy is the harshest one: cease contact and communication. If someone can’t understand you and your needs, if they gaslight or manipulate you, or if they repeatedly put your health at risk, it’s best to step away from them. Your health is the most important thing in your life, and you can’t afford to risk it. If they fight back against you, be honest and make your reasoning clear. If this person is a family member or someone who you’re forced to be around frequently, set a boundary with them with statement like: “My health comes first, and this relationship doesn’t support that. For the time being, I will need to take a step back from our relationship.”

It Gets Easier

Living with celiac disease is a learning experience, but today there are so many gluten-free food items to try and tips to learn from organizations like Beyond Celiac that it’s totally possible to live your best life in a way that doesn’t put your health at risk.

Don’t be afraid to advocate for yourself, and find people around you who treat you and your medical needs with respect!

Think you may have celiac disease?

Symptoms Checklist