26 Secrets of People Who Live With Celiac Disease
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
13. “It can cause other illnesses.” — Missy Shank
14. “While I really don’t miss the things that made me sick and while I’ll never ask for special treatment, it would be pretty awesome if people tried a little bit every once in a while to include foods I can eat at special events. When it does happen I’m over-the-moon grateful for it.” — Karen Griffith
15. “No, my daughter won’t ‘grow out of it.’” — Jennifer Wright
16. “You don’t have to have symptoms to have it.” — Sharalyn Anderson
17. “I actually gained weight after adopting a gluten-free diet… There is plenty of junk food that is also gluten-free.” — Yogi Samantha Bellerson
18. “I go through a lot of toilet paper.” — Spencer Lee Robertson
19. “There is no pill that I can take to make it go away.” — Lisa Touzet
20. “Yes, that little teaspoon of flour you used to thicken the stew will make me sick. And no, I can’t just pick out the croutons.” — Alicia Bertolero
21. “We are not just picky eaters.” — Annamaria Duggan
22. “Giving me gluten is the same as giving someone food poisoning. It is just as bad for me if not worse, because the effects are longer. While a mild case of food poisoning lasts a couple of days, for me it is a week or two.” — Hardlybored
23. “Gluten intolerance, or celiac, isn’t a fad diet.” — Annabella Couto
24. “Gluten-free food isn’t as bad as you think.” — Madeleine Wolfe
25. “Before you tell me who will be cooking our food, I need to know where the bathrooms are. And where the bathroom spray is.” — Henny Kornbluh-Kupferstein
26. “Having to explain celiac and the seriousness of the disease to family and friends is challenging. When someone is talking about it, please try to be understanding.” — Yaya Ramirez
What do you wish others could understand about celiac disease? Let us know in the comments below.
Melissa McGlensey is the former News Editor at The Mighty. Her writing can also be seen in Ms. Magazine, on the Ms.Magazine blog and in The Huffington Post’s Good News, Comedy and Impact sections. Melissa is also a New York City comedian who does sketch, improv and stand up. She is passionate about social justice, politics, Thai food, literature, disability rights and more. She is currently in a long-distance relationship with her cat, Sneakers, who lives in California. You can follow her on twitter at @OhHeyMeliss.
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