The Sleeved Celiac

Just a girl who turned her dietary restrictions into the keys to freedom.

How I Became The Sleeved Celiac

An origin story of sorts. Follow me from an average teenage girl with confidence issues to a wife and mom navigating life with Celiac disease after bariatric surgery.

The Early Years

As a teenager, I was a fairly healthy size. My BMI just barely put me in the ‘overweight’ category and my pants sizes were single digits. At just over five feet tall, one could still consider me petite, but I definitely packed some muscle.

I was involved in dance competitively and also worked at the studio as an assistant teacher. My friends and I would play kickball and ultimate frisbee, and I jumped at the opportunity to play powderpuff football. I couldn’t run a mile, but I was an okay sprinter and could hold my own in the weight room. I even participated in cheerleading my senior year of high school.

Diet culture is a huge problem in our society, and in the early 2000s, I was learning the ropes. Size large dance costumes and cheer uniforms were embarrassing. That roll that barely protruded over the top of the dangerously low waistbands of the time was disgusting. The pop princesses of the time had washboard abs and belly button rings – that was what people wanted to see.

I started yo-yo dieting as a teenager. Sometimes I was “open” about it with friends and family. Friends would exchange the latest extreme tips for weight loss – vegetables only, liquid diet, extreme low calorie “cleanses.” Eating disorders like anorexia and bulimia were talked about with a weird vibe between fear and reverence – no one wanted to get sick and die, but it would be great to look that good if you could manage to keep it in check. I would always talk about using healthy methods with my family because I wouldn’t want to disappoint them. As an honor roll sweetheart, being a disappointment was my ultimate fear.

Unfortunately, with the yo-yo dieting, a pattern was born. Discipline for a few weeks with a weight loss of five to ten pounds, followed by a ‘relapse’ into ‘normal’ eating and weight regain. Throughout my teen years, the regain would be similar to the weight lost and it wasn’t really noticeable to those around me.

Becoming a Grown Up

Just a few weeks shy of my 21st birthday, I married my high school sweetheart and the love of my life, Jeff. Adulthood already had proven itself to be a rollercoaster and my weight gain reflected that struggle. Just days before my wedding, we found that my dress would not zip and we had to rush for alterations. It was one of the most embarrassing moments of my life.

These years brought a new focus to my weight loss goals. “The Biggest Loser” was popular television, and it seemed all the rage to have weight loss challenge groups. Weekly weigh ins posed a challenge and inspired clothing choices, fasts, and extreme workouts to try to win. Of course there would be some weight loss, but the rebound weight gain would always be the real winner.

My husband has always been incredibly supportive, telling me I am always beautiful at every size. I am so blessed to have him by my side, every step of the way. Even with that support, the insecurity still had me in a chokehold.

Motherhood

By the time we had our son in late 2011, I had over two hundred pounds on my short five foot nothing frame. I had gestational diabetes and was induced early for high blood pressure. My poor feet and legs had pitting edema for weeks after delivery. With breastfeeding and finishing up college, I quickly lost the baby weight, but was still obese.

I started running the year after my son was born in an attempt to manage my weight. The Couch 2 5k program was the perfect training guide. I had gained the baby weight back and was around two hundred pounds when I ran my first 5k. When I hit the wall about 2 miles in, my mom stayed with me, cheering me to the finish line. I continued to run, used multiple popular fitness programs, and tried many different diets once my son was weaned.

While I was pregnant with my daughter, I started working frequently with a renowned bariatric surgeon. It felt so good to be able to help these patients change their lives. The knowledge that I was bringing a little girl into this world gave me a new motivation to make a healthy lifestyle stick. I vowed that I would not impress diet culture and a weight complex on my baby.

Taking Charge

After my daughter was born, I again quickly lost the baby weight between breastfeeding, work, exercise, and lack of time to eat. Unfortunately, life was busy, and the diets and exercise just didn’t stick. A year later, I was barely able to squeeze into the largest size bridesmaid’s dress for a family wedding. I was so worried about the example I was leading for my daughter.

After many talks with my surgeon, a seminar, appointments, counseling, and research, we decided that a sleeve gastrectomy was my best option. I wanted to lose the weight while my children were too young to feel a drastic change, and I hoped that they would not remember me at my heaviest. July 6, 2016 marked a new beginning, and I would not waste that opportunity.

The ‘Honeymoon’

My surgery launched me full force into my new lifestyle. I followed my dietary instructions to a ‘T’ and pushed the bounds of my allowed exercise levels. I even participated in my first 5k exactly one month post-surgery (while pushing the stroller at my husband’s requirement so I would not run.) My weight dropped quickly, and by Christmas I reached my goal.

I shifted my goals from weight-based achievements to fitness milestones. I ran my first 15k (being an ambassador for the weight loss program at my hospital) and my first obstacle course race in 2017. Competing in races and not just surviving was thrilling, and I wanted to see what this body was capable of. I had eyes on half marathons, more obstacles, and even a triathlon.

The next few years were the fittest of my life. I completed a Spartan race trifecta, running their three main distances in a single season. I led several faith-based healthy lifestyle groups. The triathlon was dropped after training proved that my shoulders have terrible range of motion for swimming and my posterior doesn’t tolerate bicycle seats. I ran a half marathon, a long road relay race, a 25k, and culminated my fitness journey with a full trail marathon in 2020.

Struggling Again

For years I struggled with a ‘touchy stomach.’ Usually I wrote it off as a product of my bariatric surgery – a well worth it price for my new freedom, but in 2020 it became a near daily issue. I was no longer super strict with my diet, but my active lifestyle and small portions allowed me to maintain my physique. So, it was easy to blame my ‘troubles’ on the slips with my fork and the stresses of working in a hospital during peak Covid.

It was especially frustrating trying to plan my training runs during a time when public restrooms and port-a-johns were closing left and right. It was difficult to run more than a mile or two from my home, as it was likely I would need to use the restroom after four miles, and a guarantee if I was travelling more than six. I started experimenting more with my diet, trying to pinpoint the cause of my urgency, but was hesitant to make huge changes with the demand of marathon training.

After the marathon, I tried Whole30 to try to pinpoint the food that was giving me issues but was unsuccessful. I left my stressful position at the hospital and attempted to live at a slower pace. Still, the abdominal pain, cramping, and bathroom urgency was a near daily problem, and I essentially quit running. I convinced myself that this was just the way life was and that I had to suck it up.

Road to Diagnosis

In Spring of 2022, I felt ill at work and needed to leave early. By that evening, my belly pain and vomiting were so severe that my husband insisted on taking me to the ER. With the exception of elevated liver enzymes, my tests came back normal, and they sent me home after my symptoms were tolerable. Because I worked in surgery, they were concerned about viral Hepatitis, but those tests were negative. After a retest a few weeks later, my enzymes were normal and it was assumed that they were temporarily elevated because I had been fighting a common viral illness.

Life went back to my uncomfortable normal for months after that. I adjusted my schedule and my activities to accommodate my troubles and resigned myself to an existence tied to the restroom. Unfortunately, Christmas 2022 brought another incredibly painful episode and I landed in the ER shortly after my kids opened their presents. Again, things were normal apart from liver enzymes and I was sent home once stable.

Now with two instances of liver enzyme issues and major abdominal pain, I earned an appointment with a gastroenterologist. It took months to get an appointment, but I lucked out with an incredibly attentive PA who was willing to run the full gambit of testing. She offered a colonoscopy even though I was young, and I accepted, eager to get to the root of the problem. I was lucky yet again, when the doctor had a cancellation the following week and I was able to schedule the procedure on a rare day off of work. When some of my bloodwork came back concerning for Celiac, they agreed to add an EGD to my procedure and take biopsies to be sure.

About a week after my EGD and colonoscopy, I got the call that would change the rest of my life. A nurse from the GI office told me that my testing came back and that the doctor was diagnosing me with Celiac. This meant I needed to immediately adopt a gluten-free diet and they would send me some information in the mail. She asked me if I had any questions, since my follow up appointment wasn’t for another six months. Overwhelmed, I simply requested an earlier appointment, and she scheduled me out four months instead of six.

What now?

That phone call left me feeling like I had been hit by a bus. I am a fairly educated person and had a very rudimentary understanding of the diagnosis, but I felt so lost. How would I explain to my family? What did I need to do when I got home? Where was I supposed to start? I did call the GI office back and they suggested consulting The Celiac Disease Foundation.

I joined multiple support and lifestyle groups on social media in an effort to find community. There I learned about cross contamination and what items could be dangerous in a shared kitchen. There we would celebrate small victories and mourn the ease of our lives before Celiac disease.

Thankfully, I had done some research preparing for this diagnosis and had a basic understanding of the importance going gluten-free. I was able to reach out to friends who have family members with Celiac for tips. A dear friend of mine is a registered dietitian and also had a lot to share. My husband also had been doing his own research, and he has been in my corner right from the start. I can’t imagine this journey without his support.

The information sent to me in the mail from my GI doctor was two pamphlets. One a rudimentary explanation of a gluten free diet and the other an overview of Celiac disease. To be fair, I’m not sure what I expected from the office at that point, but I needed more support. They did refer me to a dietitian, but they also couldn’t see me for months. I needed to change my life now, not months later.

The Sleeved Celiac is Born

As I grow more and more comfortable in my daily life with Celiac, I’m noticing so many recurring themes in these online groups. People are scared and confused about what to do once they are diagnosed. The cost of groceries keeps rising and gluten free replacements are already at a premium. Travelling with Celiac is difficult and requires planning. Feeling like a burden to family and friends is a constant worry. Weight management on a restrictive diet is difficult.

I created The Sleeved Celiac in an effort to help people with these common issues and more. Yes, feeding my body is not a simple as it was before diagnosis, but I feel so much freer without the constant symptoms. I want to share how I’ve learned to fuel my body healthily, on a budget, and with foods that my family loves. I want to share how I can still take my kids away for the weekend with some preparation. Everyone deserves to find freedom in their lifestyle.

My Goal

Today you’ll find me working to heal my body and spirit while I nurture my family. I’m building a catalog of favorite recipes and guides for navigating life with Celiac and other restrictions.

My goal is to post often and be available to answer questions and give tips to others in their journeys. As one of my favorite characters, Albus Dumbledore, says in Harry Potter and the Prisoner of Azkaban, “Happiness can be found, even in the darkest of times, if one only remembers to turn on the light.”