“When I was first diagnosed, I felt really helpless. I felt really powerless—like I had this disease, there’s no cure, and I can’t do anything about it. I can avoid gluten, but that’s not quite enough. But with Beyond Celiac, I’ve felt really empowered. We can drive research to find a cure, and that’s something that all of us have to come together to do. No one of us can do that independently, but together we can all make real meaningful progress toward finding a cure, towards improving all of our lives.
Meet Bill Mogavero (New York City, New York)
Though the average person with celiac disease can wait up to 6–10 years for a diagnosis, Bill Mogavero is one of the lucky few with an expedited journey. Diagnosed with celiac disease in 2017, it only took a single physician to test for celiac disease. “I feel like I was pretty lucky,” says Bill. “I had very typical gastrointestinal (GI) symptoms for about six months, and then I saw my primary care doctor and she tested for celiac disease as part of a bunch of tests that she did, and it came up positive, so I went to the GI doctor, got my endoscopy, and got it confirmed. Considering it was really quick, I was very lucky that I got tested right away.”
While Bill’s journey to a diagnosis was relatively simple, adjusting to the gluten-free diet proved a much harder endeavor. “My biggest challenge has been trying to identify hidden sources of gluten, and for a while it was sort of a general anxiety around eating and trying to make things work. After about a year, I became comfortable with the gluten-free diet to the point where I can go into a restaurant and know if I feel safe or not and ask the right questions and if not, not eat, and know that’s okay and not worry about it. Or I can go into a grocery store and know that it’s going to take me longer because I’m going to have to read the fine print on the packages.”
“I remember even before I was diagnosed, seeing in the grocery store something like produce or yogurt or something labeled as gluten-free, and thinking, ‘Oh my gosh, that’s so ridiculous. Obviously, apples don’t have gluten in them.’ And after my diagnosis, I was like, ‘These stickers are like my saving grace!’”
Undeterred by the difficulties in maintaining a celiac-safe, gluten-free diet, Bill finds the silver linings in his diagnosis, from finding new recipes to being more conscious about the food he buys. “I like the idea of taking my health into my own hands and being able to actively do things to be healthy,” Bill explains. “In learning about celiac disease, and learning about gluten and food, it generally exposes you to the fact that there are a lot of things in food, and anything that comes in a bag or a box has probably been through a lot of processing, and there’s a lot of stuff in there that you might not even know what it is, and so I appreciate having that knowledge.”
Yet, despite having years of experience under his belt, the daily hassles of maintaining the gluten-free diet are still present in Bill’s everyday life, from constantly needing to parse out which products are truly safe to eat, ensuring no trace amounts of gluten are present in his diet, and, of course, managing social situations.
“Before the pandemic, when there was a lot of social eating and eating at work, I ended up just kind of doing my own thing,” Bill explains. “So, if there was a work lunch, I would bring lunch. If people were going out, I would have to call the restaurant beforehand, and if they didn’t have something, I would pack my own food or grab something on the way. I became the master of eating on the fly, eating in between places when I needed to, and so that was a challenge then. And now, during the pandemic, the challenge has been that I found it harder to connect with actual restaurants and with chefs and people who are serving the food because there’s less contact. It’s harder to say, ‘Hey, I need special treatment. Can you take care of me?’ when you’re ordering through DoorDash.”
It was in part due to these challenges that Bill was driven to participate in celiac disease advocacy. Bill initially became involved in the celiac disease community by running in the Philadelphia Step Beyond Celiac 5k Race and volunteering on the Beyond Celiac Gala committee. Now, he’s further involved as a Reach Beyond Celiac Ambassador.
“I have felt really empowered, and I would like to be able to share that with other people and help other people feel this same way and take action to move our cause forward. I want to help everyone who has celiac disease, all the parents and families of people with celiac disease, and everyone who wants to invite us to pizza parties that feel awkward about it. I think it’s a great cause and I’m really excited for all of the positive change that we can make.”
It is the promise of positive change—a cure for celiac disease by 2030—that excites Bill for a future of possibility and ease.
“I think more than anything, it would just make life easier. It would make things more relaxed. I wouldn’t have to be so meticulous about reading the labels in the supermarket or being at a friend’s place and they say, ‘Oh, I’ve cooked you this gluten-free option!’ and not have to worry like, is it gluten-free enough? Am I going to offend my friend? I think that’s really the biggest part, and I really look forward to the social aspect of food just being an easy social thing that doesn’t require extra effort and doesn’t require extra worry.”
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