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Real Talk: I have Celiac Disease

Hey guys! This is my Real Talk series where I interview people about their different experiences and perspectives. Today we're hearing from Casey from Casey the College Celiac about her experience with Celiac disease.

Tell us About Yourself 

My name is Casey Cromwell and I’m the blogger behind Casey the College Celiac. I started my blog when I was diagnosed with celiac disease a few months before I started college, and I’ve been blogging ever since.

Now, I’m a grad student at Minnesota State University, Mankato, earning an MFA in Creative Nonfiction and teaching English 101. A few fun facts: I’ve been known to go through six zucchini’s a week and my favorite snack is definitely homemade granola!

What is Celiac Disease?

Celiac disease is an autoimmune condition in which ingesting gluten causes inflammation in the intestines. There is no cure except for a strict gluten free diet free of cross contamination.

Around 30 to 40 percent of Americans are born with at least one of the two genes associated with celiac disease, but they can eat gluten with no problem until the gene is activated.

Scientists are still trying to figure out what “activates” the gene, and are working on celiac treatments other than a gluten free diet.

What were some symptoms and the process for getting this diagnosis? 

One of the challenges with accurately diagnosing celiac disease is that it actually has over 300 symptoms , and some of them don’t have anything to do with the digestive system (like rashes or migraines).

I feel very fortunate that I was diagnosed only a few months after my symptoms started. I exhibited some of the more “known” celiac symptoms, like acid reflux, stomach problems and random weight loss.

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My doctor was extremely thorough and immediately got my blood tested for celiac disease antibodies. After my blood test returned positive, my doctor requested an endoscopy to check for intestinal damage and confirm my diagnosis.

Keep in mind that going gluten free before receiving an official diagnosis can interfere with blood test and endoscopy results since you aren’t eating gluten and therefore aren’t causing inflammation. So if you suspect you have celiac disease, wait to go gluten free until you’ve talked to (and likely be tested by) your doctor.

What are some ways to mitigate Celiac symptoms?

The only way to mitigate celiac symptoms is to follow a strict gluten free diet that is also free of cross contamination. No exceptions!

For some celiacs, though, going gluten free may not be enough to heal from the previous gluten damage and inflammation. I explain the extra steps I had to take to feel healthy again in this post.

How has this disease affected your college life?

Celiac disease impacted my college experience in several ways. First, my body didn’t heal “normally” on a gluten free diet as expected. As a result, I kept losing weight (getting down to 83 lbs at 5’3’’) and I was hospitalized for a week due to malnutrition and vitamin deficiencies during my first semester of college.

I actually wrote one of my final exam essays in a hospital bed! During that time, I also had to be fed through a feeding tube. All of this, as you might expect, made me feel anything but the “normal” college student.

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Having celiac disease in college also complicated how I could safely feed myself. Although I was initially able to work out gluten free accommodations with my college cafeteria, I had to cook all of my own meals after freshman year. While this meant that I learned to cook some dang delicious meals, cooking also took up a lot of my time and I wasn’t able to eat socially in the cafeteria with the rest of my friends.

How have you found ways to cope with your disease?

Even four years after my celiac diagnosis, I’m still learning new tricks and tips each day. I think the key to staying healthy with celiac disease is a mix of 1) food prep, 2) prior research, and 3) confidence.

I’ve figured out that grad school is three times as busy and time-consuming as undergrad, so food prep has been key to making sure I have something safe (and delicious) to eat every day.

I roast a big thing of veggies every few days, and I always have some easy dinner components - like potatoes, pre-cooked and frozen batches of rice and grains, beans or other protein, etc. - ready to be thrown together in 30 minutes or less.

I’ve also learned to research everything. If I’m going on a family vacation or road trip somewhere, I look up gluten free options ahead of time and call to make sure their food is celiac safe. Reading the labels (and looking up allergy statements) of food is another one of my normal habits now.

Finally, I’ve realized that there is nothing to be ashamed or embarrassed about regarding celiac disease. It can be awkward to constantly turn down offered foods, especially when people assume you’re just eating gluten free to lose weight or because it’s a popular fad diet. However, being polite is not worth getting glutened, which basically turns me into a zombie (complete with major fatigue and brain fog) for a week or longer. Never apologize for advocating for yourself!

What's one of the most frustrating parts of the disease?

The most frustrating part of celiac disease is how much it does interfere with your social life. I can’t hang out with friends and eat at whatever restaurant we happen to find. If I’m dating someone, he has to brush his teeth before kissing me (I can get glutened by kissing if the person has recently eaten gluten).

And since almost all college events revolve around food - whether it’s pizza at a club event or going out for burgers and drinks after class - not being able to eat with everyone else can be awkward.

What do you want people without Celiac to understand about the disease?

I want people to know that, for people with celiac disease, a gluten free diet is our medicine. Do we wish we could eat that cake you say is amazing or be “easier” eaters? Of course!

But untreated celiac disease can have a variety of scary consequences, from vitamin deficiencies to cancer. So eating gluten free isn’t a dietary preference; for celiacs like me, it’s a medical necessity.

How can people support those with Celiac disease?

Be curious, flexible and respectful. If you honestly want to know more about celiac disease, please ask - many of us don’t mind educating others, especially when someone honestly wants to know more.

It’s also a HUGE help when people are willing to be flexible and accommodate us by letting us choose the restaurant, keeping the counters clean of crumbs, etc. Friends and family who accept us, celiac quirks and all, are true blessings.

Casey is the blogger behind Casey the College Celiac.  Connect with her on the platforms below.

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