Growing up, I always struggled with stomach issues. It might sound very surprising (or even gross), but I genuinely thought going #2 every two weeks was normal. Imagine my shock when I discovered in adulthood that most people poop at least once a day! That revelation was just the beginning of a journey that changed my life.

My Celiac Journey

From Misery to Thriving with Awareness and Support

In March 2017, my mom had trouble sleeping and spent time scrolling through Pinterest. She stumbled across an image listing 20 symptoms of Celiac Disease. To her astonishment, I had 19 of them. While these symptoms could indicate other conditions, it was enough to make her wonder if I had a gluten allergy.

The next day, we talked about it, and I decided to give a gluten-free trial a shot. The plan was to indulge in all my favorite gluten-filled foods over the weekend before cutting them out entirely on Monday. However, by Saturday night, I felt so miserable that I ditched the plan and decided to eliminate gluten immediately.

Within three days of going gluten-free, the constant migraines I’d suffered for years stopped. I started to feel better almost instantly. This transformation prompted my mom and me to dive into research about gluten intolerance and Celiac Disease. That’s when I found the incredible Dr. Cynthia Rudert.

The Eye Opening Discovery

Dr. Cynthia Rudert was a renowned Celiac Disease and Gluten Intolerance specialist. Her expertise went beyond diagnosing; she educated patients on the dangers of gluten lurking in everyday items—from paper plates and straws to toilet paper and envelopes. With her guidance, I was officially diagnosed with Celiac Disease, not just an intolerance. She also diagnosed me with Exocrine Pancreatic Insufficiency (EPI), a condition often linked to Celiac patients.

Dr. Rudert’s insights were life-changing. She emphasized the importance of vigilance and label-checking, explaining that gluten could be found in the most unexpected places. Sadly, her passing was a devastating loss for the Celiac community. Her legacy, however, lives on in the countless patients she helped.

Meeting Dr. Cynthia Rudert: A Turning Point

Realizing that gluten-free living required far more than skipping fried foods was a wake-up call. With my extreme sensitivity, I had to reimagine how I approached everyday life. Walking into bakeries, supermarket bread aisles, or coffee shops with burnt toast in the air could trigger severe reactions—migraines, itching, welts, and stomach issues best left undescribed.

Traveling became an ordeal of planning and preparation. A spontaneous trip was no longer an option. Instead, I meticulously researched restaurants and created spreadsheets of safe places to eat. While I genuinely enjoy organizing and researching (spreadsheets are my love language, after all), it’s bittersweet not being able to simply pack up and go. Still, I’ve learned a wealth of tips and tricks that I’m excited to share here on my blog and social media.

Navigating Life with Celiac Disease

Building a Community and Embracing Support

Living with Celiac Disease isn’t easy, but I’ve come to realize that thriving takes a supportive community. Sharing my story is part of that effort. It’s also why I’m embarking on a new chapter with Barley, my future gluten-detecting service dog.

Raising $50,000 in 18 months to bring Barley into my life is no small feat, but it will be worth every moment and every dollar. With Barley’s incredible nose, I’ll finally have a level of protection that gives me the freedom to leave my home without constant fear of gluten exposure. The journey will be challenging, but the reward—peace of mind and improved quality of life—makes it worthwhile.

Moving Forward

If you’re navigating life with Celiac Disease or supporting someone who is, know that you’re not alone. From understanding hidden gluten sources to managing day-to-day challenges, we’re all in this together. Stay tuned for more insights, tips, and updates on my journey with Barley. Together, we can build a community where thriving with Celiac Disease is not just possible but a reality.

Thank you for reading and supporting this journey. Let's keep the conversation going!

Visit the Barley's Journey page for the latest on Barley's progress.

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• Fundraising milestones and events

• Insights into the training process of gluten detection dogs

• Personal anecdotes of living with gluten intolerance

• The heartwarming moments of meeting Barley for the first time

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