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 the 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 A.

2. “We can still eat food. Not everything contains gluten. Just the nice food.” — Clare W.

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 S.

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 P.

5. “It’s more than a tummy ache when I ingest gluten.” — Sherry C.

6. “It’s not the same thing as a food allergy. It’s an autoimmune disease that affects every part of the body.” — Angela S.

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 L.

8. “Flare-ups are unpredictable and can happen at any time.” — Mary Ellen P.

9. “We want to eat cake, trust us, but we can’t.” — Angela B.

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 R.

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 C.

12. “I’m not crazy.” — Tonya R.

13. “It can cause other illnesses.” — Missy S.

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 G.

15. “No, my daughter won’t ‘grow out of it.’” — Jennifer W.

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 S.

18. “I go through a lot of toilet paper.” — Spencer L.

19. “There is no pill that I can take to make it go away.” — Lisa T.

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 B.

21. “We are not just picky eaters.” — Annamaria D.

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 C.

24. “Gluten-free food isn’t as bad as you think.” — Madeleine W.

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 K.

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 R.

What do you wish others could understand about celiac disease? Let us know in the comments below.