My Life With Celiac Disease 

Can you imagine a life where a bite of pizza, a cupcake, or a bowl of cereal could make you feel super sick? For Josh, 17, that life is a daily reality. Read on to find out why.

Photo by Angelo  Merendino

Josh often cooks gluten-free pasta.

I’ll never forget the day of my best friend’s 10th birthday. Our teacher came around with delicious-looking glazed donuts for the whole class, and I had to just sit there, watching. That’s because I’d just found out that I had celiac disease. Having celiac disease means my body can’t tolerate foods made with gluten, which is found in most grains. Those donuts? Gluten bombs. They would have given me a horrible stomach ache, but still, it was tough to see everyone else enjoying themselves. Now that I’m 17, I know a lot more about how to handle my condition (like, for example, bringing my own gluten-free treats to birthday parties). Here’s what I want you to know about how I’m not letting my celiac disease hold me back—and my advice for other kids who might be facing a gluten-free future.

Courtesy of Family

Josh loves being active and is an avid golfer.

A Pain Scale

When I was 8 years old, I’d wake up with a stomach ache almost every morning. I’d eat a piece of toast for breakfast, and by the time I got to school, I’d often be in such horrible pain I could barely walk. A lot of times I’d throw up or get diarrhea (gross, I know). And I had terrible migraine headaches.

My stomach pain became so frequent that my mom and I developed a scale: If I told her my pain was anything higher than a 7, we’d go to the hospital. But the doctors kept saying I seemed physically fine, and I was probably just nervous about school. It was really frustrating.

An Important Test

Finally, after about a year and a half, my mom asked my doctor to check my gastrointestinal system, which is the group of organs that help you digest food. My doctor gave me some blood tests, which showed that it was likely I had celiac disease. To confirm that I had the disease, they performed an endoscopy, a procedure where they used a tiny camera to look at my small intestine. Your small intestine is lined with little tubes called villi that help you absorb nutrients from food. In people with celiac disease, the gluten in foods causes an immune response that damages the villi, so our bodies don’t absorb many nutrients.

My endoscopy showed the doctors that my villi were completely flat. I did in fact have celiac disease. Having an answer for why I felt sick all the time was a relief—but what came next felt really scary.

A Brand-New Diet

My doctor told me that for the rest of my life, I’ll have to avoid gluten. That means not eating any food that has wheat, rye, barley, malt, or some oats. In other words, no bread, pasta, cake, or cookies. Once you start looking for gluten, you realize it’s in so many foods we eat every day.

Even the smallest amount of gluten can trigger a reaction for me, so none of the food I eat can even come in contact with foods that have gluten. People with celiac can’t use a toaster that’s had regular bread in it, have food off of a grill that has had gluten on it, or share a strainer that’s been used for regular pasta. We can’t have peanut butter that may have leftover bread crumbs in it.

When I go to a restaurant, I need to explain to the waitstaff that my food has to be prepared separately. I’ve also had to learn how to read ingredient labels really closely. I often reread labels two or three times to make sure the food is safe.

Avoiding Exposure

After I was diagnosed, my mom got all new utensils and pots and pans. Now there are no foods with gluten in our house. She even started a gluten-free baking business. My girlfriend’s family has also been really supportive: They have separate gluten-free snacks for me and always clean things to avoid having my food accidentally come into contact with something that’s touched a food with gluten.

Unfortunately, there are still times when I’ve accidentally been exposed to gluten. I’ve gotten so sick that I’ve had to miss school or other events I’d been looking forward to.

I’d love to be able to walk into a restaurant and order whatever I’d like, without having to worry that it will make me sick. Traveling can be really tricky, and it’s also hard that my school cafeteria doesn’t serve any gluten-free items. It makes me feel awful when someone has gone out of their way to buy or cook something nice for me, but I can’t eat it.

Silver Linings

As stressful as life can be with celiac disease, being diagnosed has had some upsides. Now that I know to avoid gluten, I no longer have horrible stomach pain or migraines, and I feel much healthier in general. I’ve also gotten really interested in cooking and baking gluten-free recipes. My favorite foods now are my mom’s amazing enchiladas and baked ziti. You’d never know they don’t contain gluten!

I’ve come to learn that an allergy or illness may affect your life, but it doesn’t have to define your life. I’m an avid golfer and bowler, and I love reading and writing. I want anyone who’s struggling in any way to know that other people have gone through whatever you’re facing, and that it really does get easier.

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