Navigating Celiac Disease
& a practical guide to living with this autoimmune disease
“We need to see if you can eat before we discharge you, so here are some crackers,” the ER doctor said, handing me a pack of saltines.
I quickly responded, “I have celiac disease, so I can’t have crackers.”
“Oh, sorry about that. I don’t think we have any gluten-free food here,” the doctor replied.
We stared at each other for a moment. “I think I’ll be okay. I’m not that nauseous anymore anyway,” I said.
Celiac disease is an autoimmune disorder that triggers an immune response—essentially causing the body to attack itself—when gluten is ingested. Consuming more than 20 parts per million of gluten can make someone with celiac sick and damage their intestines. Gluten is a protein found in wheat, rye, and barley.
You’d think a hospital, of all places, would have allergen-friendly food. I’d hope someone would notice my allergy bracelet or check my chart for a key diagnosis before offering me food, but at this point, nothing surprises me.
I’ve been in hospitals where I’ve gotten sick from cross-contact despite claims of allergen protocols. At one hospital, the only gluten- and dairy-free option for most meals was a pile of green beans (I wish I were joking).
Cross-contact occurs when an allergen is accidentally transferred from one food to another. For example, using the same knife to cut both regular and gluten-free bread can make someone with celiac sick.
People with celiac disease aren’t taken as seriously as those with other allergies for several reasons. First, many people on gluten-free diets claim to have an allergy but still eat bread. I saw this constantly when I worked in restaurants, and it made people distrustful of anyone who said they had a gluten allergy. Second, people with celiac don’t immediately die if they eat gluten. We don’t go into anaphylaxis. However, continuous exposure to gluten—whether through cross-contact or direct consumption—increases the risk of long-term health complications and even mortality.
When I was diagnosed with celiac disease, my doctor never mentioned cross-contact. I cut out gluten but was still sick for years. I nearly died because I developed a tumor and intussusception in my small intestine, which went undiagnosed for far too long.
The United States has embraced an individualistic approach to allergens. Embedded in American culture is the “pull yourself up by your bootstraps” mentality, and that extends to allergens. Our society often lacks the patience and communal care needed to ensure everyone can gather at a table and break (gluten-free) bread together.
In the U.S., gluten isn’t required to be labeled as an allergen—unlike milk, nuts, wheat, and others. Even oats labeled “gluten-free” aren’t always celiac-safe (PRO TIP: If you want to eat oats, make sure they’re certified gluten-free). This is a stark contrast to policies in Canada and the European Union. In the U.K., people with celiac can use a prescription card to buy gluten-free staples like bread. Italy has the strongest celiac policies in the world, recognizing the social importance of food and how losing that cultural connection can impact mental health. Italy provides patients with up to 140 euros a month in vouchers to buy gluten-free food, as these products cost, on average, 139% more than their gluten-containing counterparts. Public establishments like schools and hospitals are required to offer celiac-safe food, and all children under 17 are screened for the disease. The cultural awareness there is far beyond what we see in the U.S., where waiters often ask me questions like, “Broccoli has gluten?”
With all that in mind, I’ve compiled a list of things I wish I’d known when I was diagnosed with celiac disease, as navigating it can be incredibly challenging.
Please note that this is for educational purposes only and should not be taken as medical advice. Always consult a qualified medical professional for guidance regarding your health.
Educate yourself on cross-contact. After my tumor, I took a course by celiac dietitian Taylor Silfverduk. It was pricey but worth it. If it’s out of your budget, I recommend finding a registered dietitian through your insurance who specializes in celiac disease (many don’t know about celiac or cross-contact, so screen carefully).
Take time to mourn the loss. It might sound silly to mourn a food group, but food is more than just nourishment. It’s how we gather, celebrate holidays, and carry on traditions. It’s a loss, and you’re allowed to grieve it.
Get comfortable bringing your own food. It can feel awkward at first, but it’s better than going hungry. Over time, your friends and family will see it as normal.
STAY AWAY FROM CAST IRON PANS. I repeat: STAY AWAY FROM CAST IRON PANS. It’s impossible to remove gluten from cast iron, so unless it’s always been gluten-free, DO NOT USE IT (I was sick for six months because I didn’t know this).
Have a plan for when you’re glutened. I take Gluten Away at the onset of symptoms. An hour and a half later I take activated charcoal.
Use social media to find safe restaurants. Most people know about the app Find Me Gluten Free, but I’ve found the best celiac-safe spots on TikTok and Reddit. During a 10,000-mile road trip last year, these platforms led me to some of my favorite meals.
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Now here are some of my favorite things when it comes to gluten-free products and stores
Best Store-Bought Bread
Green Lite Bread (found at Whole Foods and Wegmans)
Best Store-Bought Bagels
Trader Joe’s Gluten-Free Bagels
Best Store-Bought Ice Cream
A tie between Ben & Jerry’s Dairy-Free Boom Chocolatta and Whole Foods’ Gluten-Free Cookie Dough
Best Flours for Baking
For Cakes/Cookies/Bars: Pamela’s Baking and Pancake Mix
For Breads: King Arthur’s Gluten-Free Bread Flour
For Pastries: Bob’s Red Mill 1:1 Flour
Best Recipes
No Gluten, No Problem (Pro tip: You can substitute their artisan flour mix with Bob’s Red Mill 1:1)
Most Helpful Cookbooks
The How Can It Be Gluten-Free Cookbook by America’s Test Kitchen
The Elements of Baking by Katrina Cermelj
Best Grocery Stores for Gluten-Free Items
Wegmans
Aldi
Trader Joe’s
Bakeries I Dream About
Mariposa Baking Company (San Francisco, CA)- If I were rich, I’d fly there regularly just for their croissants!
A Summers Treat (Philadelphia, PA)- Okay, sorry this is just a shameless plug for my own baking company
I love all these tips. And I’m baffled that hospitals in the US don’t regularly offer gluten-free food.