Is thriving with celiac disease possible? Ask Casey Cromwell. Casey had never heard about gluten, read food labels or worried much about food before she was diagnosed with celiac disease over a decade ago. Since then though, she has dedicated herself to creating awareness about the disease by talking about her condition and giving tips online.
I came across Casey’s profile on Instagram (@collegeceliackc). Casey posts fun reels and photos that depict typical incidents in the daily life of a person with celiac disease. She also has a website, Casey the College Celiac, where she posts gluten-free recipes and food guides for travelers. I asked Casey some questions about her condition and the challenges people with celiac disease face in real life.
Manasi: How long have you known about your celiac disease diagnosis, and what led to the discovery?
Casey: I was diagnosed with celiac disease 11 years ago as a senior in high school. I’d been having some random weight loss, constant acid reflux and fatigue for several months. My mom insisted I go to the doctor, who thankfully ran blood tests for a bunch of things, including celiac disease. After my blood test suggested celiac disease, my diagnosis was confirmed with a endoscopy, colonoscopy and biopsy shortly after.
“Before my celiac diagnosis, I had never heard of gluten and never read labels or worried much about food.”
How has your life changed since adopting a gluten-free diet?
Before my celiac diagnosis, I had never heard of gluten and never read labels or worried much about food. What a lot of people don’t realize is that celiac disease changes FAR more than your diet. Obviously my entire diet had to change to me eating gluten-free, but I also had to learn how to read labels, advocate for myself at restaurants or social events, navigate dating and informing a potential partner of my dietary needs, learn how to cook when I went to college a few months later and could not always rely on the cafeteria, etc.
I also experienced a lot of health complications from the amount of damage that had been done to my system pre-diagnosis so I had to go on a liquid diet for a short time, followed by being hospitalized and given a feeding tube near the end of my first semester of college.
What challenges do you face when trying to maintain a gluten-free diet, especially in social settings like restaurants or family gatherings?
Any restaurant or social event involving food requires a lot of pre-planning and research, like calling the restaurant to ask about their celiac protocol or to see if they’d be OK with me bringing my own food if they don’t have any safe options.
Celiac can also be extremely isolating because it sometimes isn’t worth going to social events that are specifically about food that I can’t eat. A lot of people also don’t understand that for someone with celiac disease, food that has no gluten ingredients but has come in contact with gluten is still not safe for us. So people will often ask if I can just eat the filling out of a pie or the toppings off of pizza when that isn’t safe.
“Celiac can also be extremely isolating because it sometimes isn’t worth going to social events that are specifically about food that I can’t eat.”
How do people around you, such as friends, family, or colleagues, typically react to your gluten-free needs?
I would say that most people are supportive of my gluten-free needs but don’t usually understand the severity of celiac and how sensitive someone with celiac can be to cross contact. So it can be stressful when someone insists on cooking a gluten free meal for me, for example, when they don’t have a gluten free kitchen and aren’t well-versed in all the weird places gluten can hide, like soy sauce.
I have had people be extremely hurtful toward me because of my dietary needs, like an ex’s mother who constantly accused me of making up celiac for attention, but mostly people try to be supportive but just aren’t very educated on celiac. I always recommend that people who want to make gluten-free loved ones feel included in social events or parties just reach out to their specific gluten-free loved one and ask what steps would make them feel safe. Because, at the end of the day, all gluten free eaters can have different needs and boundaries.
“I always recommend that people who want to make gluten-free loved ones feel included in social events or parties just reach out to their specific gluten-free loved one and ask what steps would make them feel safe. Because, at the end of the day, all gluten free eaters can have different needs and boundaries.”
Casey Cromwell is a US-based gluten-free content creator who’s been sharing her journey with celiac disease online since she was diagnosed at 17 right before college. Since then, she has grown her online community of gluten free eaters to over 100K in size by sharing celiac humor, gluten free product reviews and round ups, restaurant recommendations and more. Learn more on her website (https://www.glutenfreewithcasey.com) or Instagram (https://www.instagram.com/collegeceliackc/).