MILLBURN, NJ - On a cold Thursday night in late November a few years ago, my parents sat me down and told me I was diagnosed with Celiac disease after I went to the doctor to complete a routine blood test. I had no idea what Celiac even was, and when my mother reminded me that it was a disease which resulted in people having to avoid eating gluten, I was sure I didn’t have it because I ate gluten all the time and never had a problem, or so I thought. I looked it up and quickly realized that I didn’t have the “typical" symptoms. I was not short for my age, and I didn’t have any digestive issues. I ate gluten all the time, and I felt completely fine.
After learning more about Celiac, I found out that Celiac can express itself in different symptoms and forms. I also realized that many didn’t really know what Celiac was. If I, someone who was diagnosed with Celiac, did not know much about it before getting diagnosed, then the public at large must not be knowledgeable about it either.
So what is Celiac exactly? Celiac is a serious autoimmune disorder in which the ingestion of gluten damages the small intestine by flattening the villi, which are finger-like projections inside the intestine where nutrient absorption occurs. Celiac has no set symptoms as it can manifest in different manners for each person, although stereotypically when people think of Celiac symptoms, they think of stomach pains or a short stature.
At the moment, there is no cure for Celiac, and those who have it are required to follow a strict gluten-free diet for life. When I started my gluten free lifestyle, the adjustment was hard, and at times, I felt very alone. I never realized how social food can be. I felt like an outsider among my family and friends as I watched them enjoy foods I could no longer eat and I felt very self-conscious. It was also challenging at times to find foods to eat at school because the cafeteria wasn't well equipped for Celiac or other dietary restrictions. Additionally, eating out, in the beginning, proved to be a challenge, as many restaurants didn't realize how serious Celiac is and that not all gluten free diets are by choice or because of a fad.
It wasn't until I met with my friends, Millburn High School sophomores Hallie and Rayna Katzman, who also have Celiac, and together we (along with my twin sister Rebecca who doesn't have Celiac) decided that we wanted to make a change and create a friendlier environment for students and town residents with dietary restrictions. And thus, the Food Sensitivities Awareness (FSA) club was born.
Through this club, members have given support to each other as well as formed our own little community. Not only do we support each other, but FSA is working hard to educate the school and the larger community to raise awareness about diet-related issues, which has become more prevalent in society these days. Even though our club is only a little over a year old, we’ve accomplished so much already! We held the first-ever allergen-free bake sale at Millburn High School, and students who have dietary restrictions were excited and grateful to have the opportunity to enjoy allergen-friendly treats! We were able to donate the proceeds from the sale to Food Allergy Research and Education (FARE), an organization dedicated to spreading awareness about food allergies.
Additionally, one of the coolest feats our club accomplished so far was making an allergen-friendly Tasty video! If you’re interested in seeing it or using the recipe, feel free to check out our Facebook page (Food Sensitivities Awareness Club). Currently, we are working with the school administration and supplier for our school vending machines to have them offer more allergen friendly foods. We’ve also developed a key to post around the vending machines to give users a sense of which products are good options for their respective dietary needs.
This past week (May 14-20) was National Celiac Awareness Week, so our club developed a list of food allergy / sensitivities facts (especially regarding Celiac) which we posted around the school.
Our club is young, and next year we want to do even more to benefit our school community. We are working with the cafeteria to offer more options for students with dietary restrictions, as well as developing a younger counterpart to our club in the elementary schools (FSA Junior). We look to help elementary-age students become more educated about food sensitivities. We would also like to branch out to the town community by working with local restaurants to increase their awareness of allergens, cross contamination and encourage offering more safe options!
Celiac has certainly increased in prominence in our local community and on a national scale. About 5% of the student population at Millburn High School follows a strict gluten-free diet, and according to the University of Chicago, Celiac disease affects at least 1% of Americans (which is comparable to 3 million people). “Two and one-half million Americans are undiagnosed and are at risk for long-term health complications” (Celiac Disease Foundation). That is why spreading awareness about it is crucial! A diagnosis of Celiac can help soothe inexplicable health complications or symptoms and can prevent much more serious health issues in the future.
Being gluten free for over a year has gotten so much easier! Millburn is fortunate to have so many restaurants that are aware of Celiac and do their best to accommodate food sensitivities. Some of my favorite go-to’s include Gian Marco’s, Squirrel and the Bee, and Salad House! I’ve never felt better since going gluten free! My small intestine (which I didn’t even know was damaged) is healing and I’ve noticed that I’ve grown taller and stronger!
I didn’t realize prior to going gluten free that I felt weak and exhausted at times. Now, there’s no way I’m going back! Even though I am tempted occasionally to enjoy foods I once was able to eat, I think about the consequences of getting sick and feeling how I once felt before and I realize that it’s not worth it.
Since May is Celiac Awareness Month, I wanted to share a little about my experience and what my club (FSA) has done to spread awareness of Celiac, as many do not truly know what it is.
Additionally, I was recently certified to be a Celiac Ambassador through the Celiac Disease Foundation, and am happy to be a resource for any questions you might have about what Celiac is and how to embrace the gluten-free lifestyle. Feel free to reach out for advice! You can contact me at: (973)-558-3689 or firstname.lastname@example.org.