Three million people in the United States live with celiac disease, according to the University of Chicago Celiac Disease Center. The autoimmune disorder, which causes damage to the small intestine when gluten is ingested, often gets misrepresented as a simple dietary restriction. But it’s not that simple.
The Mighty and the Celiac Disease Foundation, decided to take an opportunity to spread some awareness about the often misunderstood condition. We asked readers affected by celiac disease what they wished others could understand about the condition. This is what they had to say.
1. “Just because you look fine on the outside doesn’t mean that you are on the inside.” — Lois Abbott
2. “We can still eat food. Not everything contains gluten. Just the nice food.” — Clare Walsh
3. “We are not choosing this for fun. It is serious and a medical necessity for us. We did not jump on the bandwagon for a new diet.” — Ali Spina
4. “I wish people wouldn’t take it personally when you can’t eat their food. Even if they try to make something gluten-free, it’s likely contaminated by their cooking utensils, oven, grill or spices. I certainly appreciate it, but I always tell people not to go to the effort because I cannot eat it.” — Tara Pollman
5. “It’s more than a tummy ache when I ingest gluten.” — Sherry Heimer Cory
6. “It’s not the same thing as a food allergy. It’s an autoimmune disease that affects every part of the body.” — Angela Stickman
7. “As hard as it is for adults with celiac to be around non-celiac people at a party or family event, it’s even harder for kids. My daughter is having to grow up feeling like she is missing out. Even family members don’t understand that when you eat fancy dessert in front of her and offer her some packaged gluten-free item in its place, it still makes her feel bad.” — Sara Laferriere DeBeck
8. “Flare-ups are unpredictable and can happen at any time.” — Mary Ellen Poll Sarbaugh
9. “We want to eat cake, trust us, but we can’t.” — Angela M. Burres
10. “The financial impact can be a huge burden. Having no choice but to purchase food that is sometimes triple the cost of its non gluten-free counterpart isn’t always easy. You pay the price and get less food for your money.” — Wendy Rose
11. “I’m not trying to be a flake. Sometimes I might have to cancel because my stomach hurts. It’s not like I planned on getting sick for 10 days straight…” —Marsha Covert
12. “I’m not crazy.” — Tonya Renee