Health Personal

My Experience With Celiac Disease

December 14, 2015
My experience with Celiac Disease

After receiving email inquiries about my experience with Celiac as a result of Friday’s post, I’m excited to share a more in depth look into my personal story.

Here we go!

When I was fifteen, I came home from summer camp with my first real boyfriend, and a relentless stomachache. My parents were far more concerned about the older boyfriend than my digestive complaints. What none of us knew then was both the stomachache and boyfriend (←now my husband), were here to stay.

When every test came back negative, my doctor was stumped. With nothing to work from, he attributed the pain to having a sensitive stomach. My parents trusted his opinion; after all, he had been my doctor since I was a baby. Despite his reassurance nothing terrible was wrong, I had a nagging feeling I couldn’t shake.

Eventually I managed to convince my parents to get a second opinion. The first time I met with my new doctor, I immediately felt a difference: she listened and took my concerns seriously. She called me, not my parents, to talk about the test results. It was the first time I had any autonomy over my medical care.

Diagnosis

A blood test, endoscopy, and biopsy of my small intestine confirmed my new doctor’s suspicion: I had Celiac Disease.

After the diagnosis, I was completely overwhelmed and confused. I had what?!

At the time, I didn’t know what gluten was; let alone how to avoid it. This was 2004; even celebrities ate gluten back then.

Symptoms & Onset

I would later learn I had a younger teenager’s classic symptoms of Celiac : frequent abdominal pain, anemia, trouble gaining weight (despite an insatiable appetite), and delayed puberty.

As time passed, I’d come to understand there are genetic markers for Celiac, but genetic vulnerability doesn’t necessarily guarantee you’ll get Celiac Disesase. For many people, their genetic predisposition isn’t expressed until after a traumatic experience such as surgery, illness, or pregnancy. For me, an emergency appendectomy when I was twelve likely triggered the expression of the genes.

Emotional Toll

The remaining years of high school brought a mix of ups and downs. After going gluten-free, I went through a condensed version of puberty in just a few months. I felt awkward, self-conscious, and didn’t recognize my body.

Sometimes it felt as though I was in an alternate universe from the one my classmates lived in. Despite following the gluten-free diet, I was still very weak and would go on to have problems with anemia, bone fractures, additional food allergies, and other autoimmune conditions.

The thing I felt the most ill-equipped to deal with was the emotional toll of Celiac . I felt anxious, depressed, and deeply angry. My teen angst was out of control. Let’s just say I listened to my fair share of Dashboard Confessional and Nickelback (← embarrassing!). In all seriousness, I felt completely betrayed by my own body and had no idea where to channel my emotions.

Relationship with Food

My relationship with food also suffered. After years of malnutrition, I was encouraged to eat as much as possible because gaining weight was a sign of recovery. After years of starvation, my body did need those extra calories. However, I lost the ability to listen to my body. Even when I wasn’t hungry, if it was gluten-free, I had to have it. I ate every meal as though it was my last because I was petrified of being stuck somewhere, hungry, without safe food.

It took me years to begin to trust my body again and re-learn how to eat intuitively. Today, I eat when I’m hungry, and don’t worry about my next meal. Food isn’t anger or worry or anxiety; it’s just food.

Gluten-Free Eating Today

It's important to know how to cook when you have Celiac image

Learning how to cook is very helpful when you have Celiac.

Eating gluten-free has come a long way since my diagnosis 11 years ago. There is tremendous awareness about gluten-free foods, delicious gluten-free products, and even entirely gluten-free restaurants. That said, I’d never say eating gluten-free—because of Celiac or a gluten sensitivity—is easy.

It’s stressful to feel worried about everything you eat. It’s sad to never again get to eat some of your favorite foods. It’s challenging to have an increased vulnerability toward anxiety, depression, bone density problems, and disordered eating. Finally, it’s discouraging and painful when you accidentally eat gluten.

At 15, I thought nothing could be worse than never eating my favorite foods again; if only it had been that simple. After being diagnosed, I felt completely unprepared for the physical and emotional toll that came with it.

Here’s what I wish someone had told me 11 years ago:

Find a doctor who believes in you. It’s essential you feel supported and heard by your MD.

Be assertive when eating at restaurants: There is no shame in defending your right to eat the food that is right for you.

Know that accidents will happen: Whether the chef messed up your order or you ate a piece of pizza when you were drunk (I’m not here to judge!), tomorrow is a new day.

Stay away from processed junk. I learned the hard way that I feel best when I eat naturally GF foods and save processed treats for special occasions.

Address the emotional side of drastically changing your diet. Food is emotionally loaded for a lot of us; this is normal. Your attitude–for better or worse– is often the only thing you can control.

No one knows your body better than you do. Inevitably you’ll run into a non-believer that questions what you’re doing. Don’t give this friend/waiter/doctor/family member/coworker a second thought.

Anna Walker signature image

 

 

 

Join The Conversation!

Do you have Celiac, a Non-Celiac gluten intolerance or other food intolerance? What was your experience?

Please note, a shorter version of this article was featured on Skinny Fitalicious. I encourage you to check it out as well as Megan’s extensive list of GF recipes!

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