Was your child recently diagnosed with celiac disease? You're not alone.

At the Center for Celiac Disease at CHOP, we have a core team of doctors, nurses and nutritionists available to guide your child's care and answer any questions you have.

One thing we've learned is that sometimes children need answers and input from people other than the medical team or their parents. Sometimes they just want to hear from their peers — other kids dealing with the same everyday challenges that accompany celiac disease and living a gluten-free life.

Explaining celiac disease

How do you explain celiac disease to your friends who ask about it?

“I usually say that it’s an allergy — even though it’s not — to wheat and flour. It’s just easier for everyone to understand than an autoimmune disorder that makes my body unable to process gluten.”

— Joan, 14

“I say I’m allergic to bread and flour, that I can’t eat it. Most people seem to get it.”

— Taylor, 13

“Basically I just say I’m allergic to gluten — stuff like wheat, rye and barley.”

— Pierson, 16

“You can’t eat wheat. You can’t eat things with flour. Mommy and daddy help me pick the right foods so I don’t get sick.”

— Sydney, 5

 

“I tell them I can’t eat wheat and oats, but I can eat gluten-free stuff. Like for parties, I take a gluten-free cupcake with me. I like the vanilla icing too.”

— Allison, 8

 

Tips for celiac newbies

What advice would you give to other children or teens recently diagnosed with celiac disease?

“Don’t be afraid to tell people about celiac disease. It’s not something to be ashamed of. It’s just the way you are. I’m a lot more careful about what I eat and where I eat now, so I don’t feel sick.”

— Pierson, 16

 

“Be careful of what you eat. Get your mom and dad to help you.”

— Sydney, 5

 

“I would recommend getting some of the better gluten-free recipes such as the Betty Crocker ones, which are really good. There’s actually a lot more food options than you would think are out there. They just came out with gluten-free Rice Krispies that taste just like regular Rice Krispies and are really good. And most of the Chex cereals are gluten-free and really good too. But you also need to be really careful because the simplest things that you would never expect to have gluten in them will have traces of it. Like chicken broth or chips. It’s everywhere.”

— Joan, 14

“It’s worth it to stick to the diet. It will make you feel so much better. Before I was diagnosed with celiac disease I had a lot of stomach aches. Now that I’m eating only gluten-free food, I don’t have that anymore.”

— Helen, 16

“Giant is a good place to shop for gluten-free food. Some stuff that I really liked to eat, I can’t have anymore. I can’t have vanilla wafers — that I used to love — anymore. But I can have gluten-free lemon vanilla wafers. They taste good and I don’t get sick afterwards.”

— Allison, 8

 

“There are many options for foods. Try whatever looks interesting but make sure you check the ingredients.”

— Taylor, 13

 

Being social and gluten-free

How do you handle being gluten-free at social functions that involve food like birthday parties and holiday dinners?

“I pack my own food more and if they offer me food, I just say ‘no thanks’. A lot of times people want to eat my snacks. It’s kinda funny.”

— Taylor, 13

 

“For parties, I bring a gluten-free cupcake. For Thanksgiving, we make sure the turkey or whatever meat there is will be gluten-free. Mom and dad and me bring a gluten-free pie or something else gluten-free so we know I can eat something.”

— Allison, 8

 

“I usually contact the person who’s having the event and see what they are making and if there is a way to make any adjustments so I could have it. If they have nothing or can’t change it, I’ll just bring some gluten-free food with me.”

— Pierson, 16

 

“I eat gluten-free cookies. They’re yummy!”

— Sydney, 5

 

“Usually if there’s cake or something, I’ll stay away from that. But I can have the fruit or some little stuff or I’ll pack something to go with me like a gluten-free variation of whatever is being served. For family holidays, we’ll talk to our relatives and see what they’re planning on making and bring something — a dessert or appetizer or side — that I know I can eat when I’m there.”

— Joan, 14

 

“Usually I just don’t eat. Sometimes I’ll bring food with me or I’ll eat before I go out. But if it’s at my friends’ house, they’ll know I’m gluten-free and make sure there’s something I can eat.”

— Helen, 16

 

Teens and growing up

As a teen, what’s the hardest thing about being gluten-free?

“The hardest thing is lunch at school. Because everybody wants to offer you stuff and you have to explain to them why you can’t eat certain things. When I’m out with my friends on the weekends, sometimes I’ll just say I’m not hungry so I don’t have to deal with the questions.”

— Pierson, 16
 

“Sometimes, it’s watching other kids eat the food you can’t have. Or when they offer it to you and you really, really want it but you have to say no. That can be upsetting or irritating but you get used to it eventually.”

— Joan, 14

 

“Going to sleep overs. Because a lot of friends have food with flour in it that I can’t have.”

— Taylor, 13

 

“Usually I’m always out with friends and they all want to eat pizza or that kind of stuff. I can’t eat that so if I’m hungry, I’ll get a salad or something like that. My friends all know I have celiac so it’s not a big deal when I eat something different than they are.”

— Helen, 16

 

Gluten-free diet

Are others interested in trying out gluten-free diet and ask you questions about it?

“I have another kid with celiac disease at my school and we talk about different foods we like or brands we’ve tried. Some are definitely better than others. A few kids will ask me if they can try some of my food if it looks good, but no one has really said they want to live gluten-free if they don’t have to.”

— Pierson, 16

 

“Sometimes my friends will see me eating something they think looks good so they’ll ask me for a bite or something like that. No one’s really said they want to adopt the whole gluten-free diet but they sure do like to eat my food!”

— Taylor, 13

 

“A lot of my friends will tell me if they see something at the store that’s gluten-free. Or if they tried something and it was good and then they saw on the package that it was gluten free, they’ll tell me about it. There’s also a couple other kids at my school who eat gluten-free so we can usually ask each other ‘what do you know about this ingredient?’ or ‘do you like it? Should I try it?”

— Joan, 14

 

“I haven't had anyone say they want to go gluten-free entirely, but sometimes a friend might ask to try one of my gluten-free snacks to see if it tastes any different.”

— Helen, 16

 

Special precautions

Are there any special precautions or rules you need to follow at school or with other kids when you are gluten-free?

“I don’t eat school lunch. It’s just safer to pack my own food because I don’t know how they produce the food at school or if anything touched gluten. When I go to friends’ houses, I make sure to use clean utensils and stuff like that. I’m just a lot more cautious about what I eat and where it was prepared.”

— Helen, 16

 

“Be careful what’s in your food. Make sure you know the ingredients of what you are eating. I find I’m eating a lot more fruits and vegetables, and not as many grains. There are some decent gluten-free products like English muffins and waffles, but it’s hard to find things I really like. Since I’ve started the gluten-free diet, I feel a lot better. I don’t have stomach or related issues and don’t miss as much school.”

—Pierson, 16

 

“You can sit around other kids who are eating gluten, but you want to make sure that you don’t use the same utensil or somebody’s napkin or plate. And whatever you do, make sure your foods don’t touch at all. Even the smallest cross-contamination can make me sick.”

— Joan, 14