Years of Pain and Concern Dismissed
From the time my daughter was 18 months old, her stomach appeared disproportionately bloated compared to the rest of her body. Around the same time, she developed an insatiable hunger despite eating balanced meals and frequent snacks throughout the day. Because she was still so young, we were advised to give it time and repeatedly assured that everything was normal. This pattern persisted for years.
What stood out the most was her constant bloating—fluctuating throughout the day—and unrelenting hunger, even though she was consistently eating nutritious, whole-food meals. As a mother, PA and nutritionist, I knew something wasn’t right. Despite following an anti-inflammatory, health-conscious diet, her body was clearly showing signs of chronic inflammation. We felt frustrated and dismissed. No matter how much we advocated for her, it felt like no one was truly listening.
Over a year, her symptoms worsened. She began experiencing stomachaches in addition to the bloating and constant hunger. One night, the pain became so severe that we had to call an ambulance—she was screaming, clutching her belly, and unable to communicate anything beyond the pain.
That moment was a turning point. I sought out a new gastroenterologist, someone who finally listened. I came prepared with photos showing her bloated belly before and after meals, and detailed her years of symptoms. The doctor immediately suspected celiac disease and ordered the relevant labs. It was the first time celiac disease was ever mentioned, and I hadn’t considered it before.
Her test results came back clearly positive. A few days later an endoscopy confirmed the diagnosis: celiac disease. It was a relief to know what was finally causing her all this discomfort.
It took approximately three and a half years from the first noticeable symptoms to receive a diagnosis. The biggest challenge was not being taken seriously, even when the signs were obvious to me both as a mother and as a healthcare professional.
Life After Diagnosis
My daughter was diagnosed just days before a long holiday road trip. We had to pivot quickly as I understood the seriousness of cross-contact and how crucial it would be to adapt right away.
Still, it was overwhelming. We had to cancel dinner plans, say goodbye to her favorite foods, and rework every detail of food prep—all within days. And while we figured it out, that was just the beginning of our new reality.
Thankfully, after starting a strict gluten-free diet, my daughter’s bloating significantly decreased, and her appetite normalized. We learned that her constant hunger was her body’s way of trying to make up for the nutrients it couldn’t absorb.
Over time, we’ve found new favorite foods. We’ve discovered restaurants that take celiac disease seriously. We’ve been lucky to have friends and family who go out of their way to make my daughter feel safe and included when possible.
The most frustrating part of this journey has been the widespread misunderstanding of celiac disease. The term “gluten-free” has been trivialized as a trend or assumed to be a healthier diet, when in fact, it’s a medical necessity—not a choice. The real challenge isn’t avoiding gluten itself—it’s managing the constant risk of cross-contact. The fact that even a few crumbs can cause both immediate and long-term harm is something many people struggle to grasp, and it creates significant barriers in social situations, dining out, and travel.
We’re grateful that the gluten-free diet has worked so well for our daughter, and we remain hopeful that in the future, treatment options beyond strict dietary restrictions will become available. I’m optimistic that day will come.
