When a teenager is diagnosed with celiac disease

Guest blogging along with regular contributor Rima Himelstein, MD, is Sam Master, BA, MS IV, a medical student at Rowan University School of Osteopathic Medicine.

As you may or may not know, teenagers are special — not just because I think so, but also because they think so. They think that they are invulnerable to harm.  And it’s perfectly normal for them to think that.  It’s known as the “personal fable,” the belief that “it’s not going to happen to me.”  Today’s blog focuses on what happens when a teenager finds out that he has a chronic illness and has to live with the fact that “it has happened to me.” 

This is what happened to Sam Master, a 26-year-old medical student. Sam has agreed to tell his story because he feels it may help other teens and their parents who are faced with similar challenges.

When I was 15 years old, a family member was diagnosed with celiac disease. Even though I didn’t have any symptoms, my whole family was tested because celiac disease is genetic. It’s also common: about 1 in 130 people have it. It was 10th grade when I became part of that statistic.

Celiac disease is an autoimmune disorder. The body’s immune system reacts to gluten — the main protein in wheat, barley and rye — as a “poison” that needs to be destroyed if it reaches the small intestine. But that autoimmune reaction also destroys parts of the intestine, which normally absorbs nutrients the body needs.

The treatment for celiac disease is a gluten-free diet. Even a tiny amount of gluten can cause damage, increasing the risk of cancer and other problems. Pizza, pasta, grilled cheese, cookies, and croissants; the list of forbidden foods grew slowly in my head as I thought about all of my favorite meals that I would no longer be able to eat. The science was understandable and the disease made sense, but that did not make it any easier to watch my friends eat doughnuts. 

High school was hard enough, but now I had even more to worry about. For breakfast, name-brand cereals had to be replaced with gluten-free varieties only found in a health food store; for lunch, regular sandwiches were no longer an option; for dinner, going out to a restaurant with friends became unbearable. I became the bane of every waiter’s existence asking, “Is there any flour in that?” “Are the potatoes fried in the same oil as the breaded onion rings?” “Does the sauce have any wheat in it?” Their eyes never stopped rolling. 

I knew that I had to find a way to deal with my celiac disease — to make my life easier, to feel less embarrassed to be me. I started working for the doctor who diagnosed me and learned everything I could about celiac disease. Knowledge became empowering. I met other people with celiac disease and realized that dietary restrictions depend on how you look at them. Limitations can either define you or you can rise above them. 

It would be a lie to say that being gluten-free is easy. I’ve been gluten-free for about 11 years, 2 months, 3 weeks, and 2 days (that’s over 12,000 meals, but who’s counting?). I found a gluten-free diet in high school and college manageable as long as I had the right attitude and preparation. Maybe a nearby vending machine only has cookies and crackers … so I keep some gluten-free pretzels in my bag. Maybe the frat party only has beer …so I bring my own gluten-free drinks. Maybe the person I’m taking out on a date only loves pancakes … so we choose a restaurant that also makes delicious omelets. Now, over a decade later, gluten-free substitutes can be found at your local supermarket and eating out requires fewer questions.

I asked Sam to write this blog with me because I was so impressed with him. From the moment Sam was diagnosed, he took control of celiac disease rather than letting celiac disease control him. He learned and continues to learn everything he can about the disease. He follows the diet strictly.  Unfortunately, not everyone reacts to getting the diagnosis of celiac disease with the same positive attitude. Some teenagers do not comply with the gluten-free diet. As Sam pointed out: even a tiny amount of gluten can cause damage, increasing the risk of cancer and other problems.  

Although Sam is still in medical school, he has already been the lead author of an article  about celiac disease research. He has volunteered at the Celiac Disease Center at Columbia University and the Center for Celiac Disease at Children's Hospital of Philadelphia, and he is active in the National Foundation for Celiac Awareness


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