My Celiac Disease Diagnosis

Turning 16 is supposed to be an exciting milestone—learning to drive, preparing for senior year, and starting to think about colleges. But for me, my junior year took an unexpected turn with a diagnosis that felt both overwhelming and impossible to face. After about a year of pain, questions, and various "diagnoses", I was officially diagnosed with celiac disease in April 2019 and my world as I knew it changed in an instant. I am Julia, founder of GlutenFreedomForAll, and this is my story.

The Diagnosis: A Rollercoaster of Emotions

It all started with a series of symptoms that seemed to come in an instant— sharp shooting pains, nausea, weight loss, and spending way too much time in the bathroom. My doctor chalked them up to stress or IBS, but when these symptoms became increasingly disruptive, my parents pushed for an endoscopy. After an endoscopy and biopsy, the results came back positive: I had celiac disease.

At first, I was in shock. Celiac disease? Gluten? What did that even mean? I had thought that being gluten-free was just a fad diet. There was a lot of confusion, fear, and frustration. Growing up embracing my Italian and Greek cultures (where everything is about the food), the thought of changing my diet so drastically felt like losing a part of myself.

Understanding Celiac Disease

For those unfamiliar, celiac disease is an autoimmune disorder where ingesting gluten (a protein found in wheat, barley, and rye) triggers an immune response that damages the small intestine. This means that every meal has to be meticulously planned to avoid cross contamination, which can be a challenge, especially when dining out or attending social events. Living with celiac disease is serious, but there are ways to cope with it and manage it in an effective way.

Embracing the Gluten-Free Lifestyle

The first few months were undoubtedly the toughest. I remember my initial grocery trips—navigating the aisles in a daze, trying to understand food labels, and feeling overwhelmed by the sheer amount of new information. The gluten-free diet isn’t just about avoiding bread and pasta; gluten hides in the most unexpected places like sauces, dressings, and even some medications. I certainly didn't expect soy sauce and Lindt truffles to contain gluten.

But as weeks turned into months, I started to see improvements in my health. My energy levels climbed back up, my stomach pains began to fade, and I felt more like myself. Slowly, I became more adept at finding gluten-free options and even started experimenting with my own recipes and posting all of my gluten-free food finds on instagram.

Rebuilding My Social Life

One of the biggest adjustments was navigating social situations. I had always enjoyed exploring new restaurants with friends, attending family gatherings, and grabbing a donut after school with my sister. Now, I had to explain my dietary restrictions and sometimes even bring my own food to events. It felt isolating at first, but as my friends and family became more educated about celiac disease, their support grew stronger. I am so lucky to have such an incredible support system. They learned to accommodate my needs, and I discovered a network of restaurants and bakeries that offered delicious gluten-free options. Check out my other blog posts and Instragram for some great gluten-free food recommendations in Boston and beyond! 

Living with Celiac: Finding a New Normal

Living with celiac disease is a constant balancing act, but it’s also a reminder of how resilient and adaptable we can be. I've learned to advocate for myself and educate others about the importance of adhering to a strict gluten-free diet. It’s not just about preference; it’s a necessity for my health.

This journey has also taught me a lot about self-care and self-love. It’s about being kind to myself when I make mistakes and recognizing the strength it takes to face a new set of challenges. At 22, I might not have imagined this being a part of my life, but I’ve learned that navigating such challenges with grace and positivity can lead to unexpected growth and empowerment.

As I have coped with my diagnosis, I have found my favorite quote to be from Senator Tammy Duckworth. She says that "sometimes it takes dealing with a disability...to uncover our true abilities and how we can put them to work for us in ways we may have never imagined". Although she was not speaking about celiac disease specifically, I find her sentiment just as motivating. Although I never expected to have celiac, it has made me a stronger, more empathetic person.

To Others with a Celiac Disease Story of Your Own

If you’ve recently been diagnosed with celiac disease or are dealing with an unexpected chronic condition, know that you’re not alone. It’s okay to feel overwhelmed, and it’s okay to take your time adjusting. Reach out to support groups, seek out resources, and don’t hesitate to lean on friends and family. This new chapter of your life iving with Celiac Disease or another chronic condition might seem daunting, but it’s also an opportunity to rediscover yourself and embrace a new way of living. Who knows - perhaps you will be the next greatest gluten-free pastry chef or start a gluten-free snack company!

At the end of the day, getting my celiac disease diagnosis has taught me to never take my health for granted and appreciate the support system around me. It’s not the life I planned, but it’s the life I’m learning to live with courage and resilience. And for that, I’m grateful.

Thank you for reading my celiac disease story. Please feel free to click here to contact me.