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Health and Wellness

16 Struggles Of Living With Celiac Disease

1 in 100 Americans are estimated to have Celiac Disease, and 1/3 of the population carries the gene. Here are 16 authentic struggles as told by a veteran Celiac.

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16 Struggles Of Living With Celiac Disease
Marissa Maxfield

1. All The Doctor’s Appointments

Around the time I was diagnosed, I was getting blood tests and endoscopies galore, and constantly making trips into Chicago to see my Celiac disease specialist. Visits to the doctor are never fun, not to mention time consuming.


2. The Endless Questions

"Does this have gluten? Does that have gluten? What happens if you eat gluten? When did it start? Does your life suck?"

It’s really not that hard to figure it out, people.

(https://celiac.org/celiac-disease/what-is-celiac-disease/)


3. The Comments

“You must be so skinny.” “Just a little bit won't hurt you.” "Wow, your life must suck!"

Ignorance may be innocent, but that doesn’t make them any less annoying (dare I say - offensive).


4. Having To Repeat Yourself 2x, 3x, 4x When Ordering Anything

I was ordering a sandwich at my school’s local shop and the server said “what is gluten, anyway?” I rattled off that it is “a protein found in wheat, barley, rye, and malt". Incredulous, he asked me if I was a science major. I laughed. “No, I just have celiac disease.”


5. “Should You Really Be Eating That?”

I’m not judging you for grabbing a second plate of fries and an ice cream, so don’t judge me for indulging when I want to and controlling what goes into my body.


6. The Constant Reminder That Gluten Is Available To You

"Do You Want A Sandwich? Some Cake? A Cookie?"

You’ve known me for 3 years; please stop offering me your delicious gluten-filled snacks.


7. It’s An Invisible Disease

The full effects of celiac disease vary for each individual and are still very unclear. Possible side effects include stomach pains, digestive issues, brain fog, chronic fatigue, anemia, osteoporosis, anxiety, depression, and many more.

It’s hard to know if sleeping through your alarm was due to immunosuppression or if you're just late.


8. The Gluten Jokes

Forever being equated with vegetarianism and veganism, we get all the eye rolls and criticism of your average diet fad. I cannot tell you how many times I’ve commented on Instagram accounts “#ENDGLUTENJOKES2016". The hashtag is still up and coming, but all I’m saying is I’m not a hipster! I was gluten-free before it was cool.

I guess I can forgive you, Disney.


9. Your Friends Always Want To Eat At The Restaurant That Only Serves Burgers (And Salads)

Ok, I can be flexible. But when everyone wants to go to the burger joint for the third time that month, I can get a little uncooperative. I really don’t like salad, okay? Especially a glorified $10 salad. Is a little diversity too much to ask every now and then?


10. Someone Is Always There To Jump In With “She Has Celiac’s!!!!!!

No. No no no no. Speaking for me not only takes away my agency, but if you’re going to do it, for Pete's sake make sure you actually know what it’s called. I cannot stress how annoying this tiny little mistake can get. Especially for the 6953828th time.


11. Getting Poisoned

Eight years ago, when no one knew what gluten was, finding options was hard for my mom and I. Even now, gluten-containing ingredients are often mixed into loads of dishes at restaurants, college dining halls, etcetera. We’ve had our fair share of running to the bathroom (well, mostly my mom on that part, but don’t tell her I said that).


12. The Super-Allies

“Oh, I know what that is. My friend’s cousin’s nephew has celiac's.” Yeah? Tell me all about your personal hardship.


13. The Naysayers

"You shouldn't be so picky." "Just take the bun off." “It's all in your head." " “Back in my day, we didn’t have gluten.”

I digress.


14. The Groupies & Wannabes

Can easily be located with the mention of anything that sounds remotely like "gluten".


14. Speaking Up For Yourself Is Exhausting, and People Think You’re Being Rude

Trust me, I’m not being rude. I’m just trying to eat.


15. Special Treatment Gets Old, But It’s Necessary

At group events and on team bus rides when the food is provided, people can be jealous that you get your own personal gluten-free pizza and all they got is, well, what they ordered. Disease perks, people! They’re one in a million, so just let me have this one, okay?


16. I Can Still Do Everything

It’s hard for people like professors, coaches, and bosses to understand the toll celiac disease can take on a person. While I need my disability to be acknowledged and understood, sometimes it’s hard to find a balance between crying "uncle" and pushing through so you don't miss out on living your life.


I'm always saying celiac disease isn't a big deal. But honestly, sometimes it is. All I'm asking is you cut us diseased ones some slack every now and then, and try to leave the confusing stuff to the professionals. Or just like, hit up Google, or something. Celiac disease shouldn't be a big deal. And hopefully in a few years' time, it won't be.


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This article has not been reviewed by Odyssey HQ and solely reflects the ideas and opinions of the creator.
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