Describe your life prior to diagnosis.
Before my diagnosis, eating was just part of everyday life—easy, joyful, and completely stress-free. I was diagnosed with celiac disease later than most, around age 20 or 21, so I grew up enjoying everything from cereal and pasta to pizza and the occasional beer. Food was at the heart of my community. Most of my extended family lives nearby, and we’ve always gathered around food—sharing potlucks, cooking for holidays, and swapping stories at the dinner table.
In college, food remained central. I happened upon a house with a garden, chickens, and a barbecue, which made for great parties and events, most of which were food-centered. One of my closest friends is a classically-trained French chef who grew up in his families restaurant cooking, and with his skills and expertise and my ambition, we would regularly host large friendsgivings, crawfish boils, steak nights, and fresh-caught-fish taco Tuesdays. It was a great way to connect with friends, play music, and celebrate life.
After my diagnosis, that relationship obviously changed. Food became a source of anxiety and stress. We continued these traditions, but I was now always on the outside, which left me feeling a sort of imposter syndrome. Who was I to host and celebrate all of this if I couldn’t try people’s foods, or worse, talk about food without being asked how upset I was to have this disease—even being told it must be terrible. Like, yeah, dude, I know! No need to dwell on it. It just made a happy thing in my life a logistical challenge.
How did you find out that you had celiac disease? Did you suspect it beforehand?
I found out I had celiac disease after nearly two years of escalating symptoms and multiple referrals to specialists across California. My case was a bit of a mystery, and after many inconclusive tests, my primary care physician finally decided to run a celiac panel. The results showed highly elevated tTG antibody levels, which were later confirmed by a duodenal biopsy showing severe villous atrophy.
I had never suspected celiac. I wasn’t even aware it was an autoimmune disease—I only knew of the gluten-free diet trend from a general health perspective. It came completely out of left field for me, which made the path to diagnosis much more confusing and difficult.
How long did it take for you to get diagnosed since your first symptoms?
It took about two years from the onset of symptoms to get a diagnosis. It started with occasional bloating and abdominal discomfort, but gradually escalated to near-daily episodes of acute, debilitating pain in my stomach and lower abdomen. I couldn’t think, couldn’t move—I would curl up in a ball until it passed.
The physical toll was serious. I dropped nearly 20 pounds and hovered around 175 despite being a 6’5″ athletic male who should weigh closer to 210–215. I was anemic, constantly fatigued, and so nutrient-deprived that I once nearly fainted walking up a flight of stairs to the library. Brain fog clouded everything—my ability to study, to engage, to focus in class.
At the time, I was a molecular biology major at UC Santa Cruz. I pushed through and performed well academically, but it took an enormous toll. The hardest part was not having an answer. I didn’t know what was happening to me, so I couldn’t explain it to anyone—not friends, not professors. I just knew my body was failing, and I had no name for it. That uncertainty made advocating for myself—getting help, getting understanding—difficult.
Is there anything that could have led to you being diagnosed sooner?
Absolutely—there are definitely things that could have sped up my diagnosis, even if they weren’t realistic at the time. Looking back, the simplest thing would’ve been just running the celiac panel earlier. But honestly, I don’t blame my doctor. The symptoms I had—bloating, stomach pain, fatigue, brain fog—they’re so nonspecific. The clinical pathways most physicians are trained to follow don’t point to celiac right away, especially in someone who’s older, active, and healthy-looking on the outside.
That’s actually part of what drives me now. I work as a research associate in labs focused on precision medicine, where the goal is to catch and prevent these kinds of life-altering conditions before they get too far. I’ve teamed up with researchers at Harvard Medical School and the Buck Institute to study how environmental exposures and the microbiome influence someone’s risk for celiac disease, alongside genetics. We’re building computational tools that might one day help flag high-risk individuals early on—before they get sick, before there’s permanent intestinal damage, before it starts interfering with everyday life.
So no, in my case, I don’t think anything could’ve realistically changed the outcome. But I’m hopeful that we’re getting closer to a future where people won’t have to go through what I did. It’s not about replacing the current healthcare system—it’s about adding to it. Precision and preventative medicine can help put things like celiac disease on the radar sooner, especially since it’s way more common than most people realize. We just need more awareness, better tools, and more ways to connect the dots earlier.
Describe your experience living with celiac disease.
Living with celiac disease has definitely been challenging. The adjustment early on was especially tough, mostly because I had no prior awareness of the disease. I don’t think most people realize just how pervasive gluten is—it’s in everything, on everything—and how sensitive the immune system can be when you have celiac. For me, even trace amounts from a shared cutting board or a pan can trigger a reaction that lingers for weeks.
When I was living in a communal household, that meant constant stress. Even though I had my own cookware, things would get cross-contaminated—like a roommate using my pan to cook pasta and forgetting to mention it. It felt like there were too many variables I couldn’t control, and that led to a lot of food anxiety. For a while, I was bitter and resentful. Eating—something that’s usually routine and enjoyable—suddenly became a constant mental calculation. Every meal required thought, planning, vigilance. It was exhausting.
But things have changed. Now I live with my girlfriend, who’s committed to eating gluten-free with me, and that’s made everything easier. I’ve found a rhythm and a system that keeps me safe, and I’ve accepted that while I can’t control everything, I can reduce my stress by doing the best I can without obsessing over every tiny risk.
I’ve also learned to cook new meals, try new cuisines, and discover restaurants and chefs who take celiac seriously. I’ve found real community in the celiac world—people who look out for each other, share tips, and offer support. And honestly, there’s been a surprising amount of joy in all that.
One thing I want to emphasize is just how vital my diagnosis was. It was truly the single most important moment in my health journey. I was severely compromised before—losing weight, unable to think clearly, even struggling to walk up stairs without nearly fainting. Getting diagnosed allowed me to heal, to recover, and to return to the world I once inhabited.
And while my life is still different in some ways, I’ve made a full recovery. I’m back to surfing, climbing, mountain biking, mountaineering—I even summited Mt. Shasta and went on major backpacking trips through Europe. I’m living the outdoorsy, active life I love. Sure, there’s still some food-related stress and anxiety, but all things considered, I feel incredibly lucky.
This disease is still a burden—but for me, it’s also been an opportunity. It’s pushed me to be more thoughtful, more resourceful, and more connected. And now, through my research, I get to work toward a future where others might not have to go through what I did. That’s a silver lining I’m grateful for.
What would a cure mean for you?
A cure would be a huge gift. I’d love to return to a life where I could enjoy other people’s cooking and share my own without needing to ask so many questions or take extra precautions. It would ease a lot of the daily stress I carry around food and health. Even though I’m very careful, occasional gluten exposures still happen, and they can leave me feeling unwell for days.
I also think a cure would bring peace of mind about the future. Since I was diagnosed a bit later and lived with symptoms for a few years before getting answers, I know it’s important to minimize long-term inflammation. A cure would give me confidence that I’m protecting my health in the long run.
So for me, a cure would be twofold: it would lift a mental weight by making food and socializing feel easier and more relaxed, and it would offer physical reassurance that I’m supporting my body as best I can going forward.
Is there anything else you’d like to add to your story?
I just want to share how meaningful it’s been to see the dedication of the researchers, clinicians, and care providers working in this space. I was diagnosed about three and a half years ago, and since then, my scientific and clinical pursuit of celiac disease has brought me into a world filled with passionate gastroenterologists, internists, dietitians, nutritionists, and researchers—all working together to understand the disease and improve patient care.
It’s been genuinely inspiring to witness the collaboration between the lab and the clinic, and to see how committed these people are—not just to science, but to the wellbeing of those living with celiac. They’re smart, kind, honest, and fun to work with, and they’ve been a major source of motivation for me to keep going in this field.
So I just want to thank everyone in the celiac disease community who’s doing the work—your efforts are making a real difference, and I’m grateful to be walking alongside you.