Advocating for answers on a celiac journey
By Bailey Baker
My mother has never had an easy relationship with her gut. For as long as I can remember, food was something she navigated carefully, not with anxiety, but with the practiced awareness of someone who had learned, through trial and error and years of discomfort, that her body was trying to tell her something that the doctors didn’t recognize.
For most of her life, the official explanation was lactose intolerance. It was plausible. It was common. It was the kind of diagnosis that closes a conversation rather than opens one.
She cut back on dairy. She adjusted. She tried to manage it. And still, something was always a little off. She was still experiencing persistent digestive issues that no amount of dietary modification ever fully silenced.
No combination of food elimination seemed to solve the problem. She had narrowed her diet down to just bread and water, hoping it would finally give her an answer, and it caused her more pain than before.
She brought this information to her doctors. She was told she was fine.
She drove home without a diagnosis and without a next step, carrying the same body she had always carried, still asking the same questions it had always been asking.
When she grew older and began studying nutrition, she had learned enough about the body to read her own symptoms differently. What she was reading pointed toward gluten as the problem.
I was told early in my life that I was lactose intolerant. It was simply the family explanation, the inherited framework for why certain foods didn’t sit right. But my sophomore year of high school, something shifted. The gut issues that had always been present became harder to dismiss. They were more frequent, more disruptive, more insistent.
I was no longer managing, I was enduring. On my mother’s recommendation, I cut gluten out of my diet for two weeks once school was out for the summer. However, my birthday fell at the tail end of those two weeks being gluten free, and I’d decided that I wanted strawberry cake. After searching for what felt like forever for a gluten free strawberry cake, I’d settled for just a normal boxed strawberry cake (not gluten free). After one slice of cake and about eight hours later, I was admitted to the hospital for the worst abdominal pain I had ever felt in my life. Despite telling the doctor my experience with gluten, I left, like my mother, without answers.
After that experience, I cut out gluten entirely. And it helped. I told myself that was close enough to an answer. But the gut issues didn’t fully resolve. In my senior year of high school, I had an upper endoscopy performed to see if I’d had any irritation that could be causing my issues. All of my labs and biopsies came back normal. I was once again told that I was fine, and sent on my way. It would take years for me to learn that this is a known misdiagnosis. Standard celiac antibody tests and endoscopy biopsies can miss active disease in patients who are already gluten free, because both tests depend on the body actively reacting to gluten. Mine wasn’t. I had already removed it.
It wasn’t until years into adulthood that I went back to a GI doctor and, for the first time, had a conversation that moved in a different direction. He suggested a genetic blood test. It looks for the HLA-DQ2 and HLA-DQ8 gene markers associated with celiac disease, and it doesn’t depend on what you’ve been eating. It looks at what you were born with.
The results came back positive. I had been carrying the genetic blueprint for celiac disease my entire life.
My mother still doesn’t have a formal celiac diagnosis, but given that my genetic test came back positive, the math is not in her favor. She has a lifetime of evidence and a gluten-free diet she arrived at through her own trial and error. And now we have confirmation of what we had been trying to understand for years: We were not fine. We simply were not yet understood.
