Describe your life prior to diagnosis.
My journey with health challenges began when I was just six years old, diagnosed and treated for anemia. But it wasn’t until I turned 14 and started experiencing heartburn that things took a more serious turn. My first endoscopy revealed Helicobacter pylori, and my stomach was severely damaged. I went on antibiotics and medication for quite some time. Despite eating normally, I couldn’t gain weight—especially difficult growing up in Brazil, where gluten was everywhere, and being part of an Italian-descendant family didn’t help.
In my early 20s, I became a flight attendant for Emirates, which introduced me to new symptoms. I developed skin dermatitis and breathing allergies so severe they almost cost me my life. I eventually resigned from my position. By the time I was 26, even more symptoms showed up: esophagitis, migraines, acid reflux, and eventually nervous colitis, which put me on a colon cancer watchlist. This hit particularly close to home, as my mom’s eldest sister passed away from colon cancer. In my mind, she had undiagnosed celiac disease—she also developed hepatitis, and one of her daughters has lupus.
Between 2018 and 2020, I found myself hospitalized more frequently. Indigestion felt like it would kill me. I was so bloated that I could barely breathe, and the allergies and migraines only got worse. My hip and leg ligaments began to deteriorate, leading to multiple surgeries. By early 2021, I was in such severe pain that I lost 13 pounds in a single week. A visit to the emergency room revealed two blood cysts in my right ovary, a stomach hernia, and significant gut bleeding. I was referred to a GI specialist, and after another endoscopy, colonoscopy, and a biopsy, I was finally diagnosed with celiac disease. Shortly after, I was also diagnosed with IBS.
Once I went gluten-free, I saw significant improvements. My allergies, IBS, gastritis, esophagitis, and even my breathing issues improved. However, the migraines and hormonal issues persisted. I was experiencing early menopause for almost a year. After some tests, my OBGYN discovered my ovarian reserve was low, and an Ovarian Antibody Screen indicated premature ovarian failure. Despite having insurance coverage, I struggled to find a clinic in the U.S. that would help me with egg retrieval. This led me back home to Brazil, where I had to pay out of pocket for treatment. In the end, we were able to retrieve six eggs, with four mature and healthy enough to freeze.
Since then, I’ve become passionate about advocating and educating others about celiac disease. It’s been a challenging journey, but I hope to help others navigate their own path toward diagnosis and healing.
How did you find out that you had celiac disease? Did you suspect it beforehand?
I was hospitalized and was recommended to see a GI ASAP and ask for a biopsy. I didn’t suspect; having Gi issues was a part of my life, so I didn’t think too much into it.
How long did it take for you to get diagnosed since your first symptoms and what (if any) challenges did you face along the way?
Almost 20 years.
Do you believe anything could have sped up your diagnosis?
Yes, if the doctors weren’t so hung up on the fact that I was “too young” for a biopsy, that could have helped me to get diagnosed earlier.
Describe your experience living with celiac disease.
Living with celiac disease has had its challenges, but my transition to gluten-free eating at home was easier than expected, thanks to my upbringing in Brazil, where natural and superfoods were always part of our diet. My love for fruits, vegetables, and salads made it easier to adjust. While animal protein wasn’t always my favorite, I include it in my diet to stay healthy.
However, eating gluten-free in American restaurants has been much more difficult. My options are significantly limited, and I often encounter cross-contamination. There was also a grieving period when I couldn’t make my Italian family recipes anymore, until I figured out the right gluten-free flours and ingredients. It’s still challenging to participate in events with my boyfriend’s family, as navigating food restrictions can make social gatherings more complicated.
What would a cure mean for you?
Happiness—a return to self!
