Trusting Your Gut, When You Can’t Trust Your Gut

From the beginning, I knew there was something wrong. I just didn’t know what. Or more importantly, how to resolve it.

I can remember having symptoms as early as high school. I just didn’t feel good after I ate. Abdominal pain, gastric distress, and bloating frequently left me writhing uncomfortably at my desk, but what really confounded me that no one else seemed to be plagued by these issues. I dreaded lunchtime in the school cafeteria, where I would feel pressured to eat something that would inevitably make me feel sick afterwards. I didn’t know how to explain it to others. It felt like my insides were rotting. I wasn’t trying to be dramatic or draw attention to myself, it was just a curse that I thought I had that no one else seemed to relate to. Eventually, I managed to avoid that particular situation by spending the lunch period studying in the computer lab or working on my latest project in the art classroom, tiding myself over with a cappuccino, and maybe a Reese’s or French fries if I felt like it. There were a few things that I seemed to be able to tolerate without adverse reactions, but at the time, I never traced it to any one particular ingredient.

Because of the near-constant GI problems I suffered, I didn’t have a great relationship with food. Of course, I was hungry, and often had a ravenous appetite, but the possibility of pain after eating was a big turn-off. I was between a rock and a hard place, unsure if it was the food or my gut that was not to be trusted, or maybe both. I was frequently mistaken for being a vegetarian on account of being so pale. My routine physicals and bloodwork didn’t turn up anything abnormal, other than my complaints of gastrointestinal discomfort and being underweight. I was prescribed a pill for anxiety. Guess what? It didn’t help.

Life Goes On… Sorta

Fast forward through college, my post-baccalaureate program, and to my more-or-less professional life. I still had the same stomach issues, but I had gotten used to them enough and accepted the fact that it was simply the way I was, a side effect of being me. After all, nobody’s life is perfect and everyone has their own troubles; this just happens to be mine. However, now I was frustrated with my apparent inability to gain weight or build muscle, despite my structured workout routine and what should have been a surplus intake of calories and protein. My progress was additionally inhibited by joint pain that started developing in my mid-twenties. I was completely stumped on how I could be getting arthritis at this age; I had only participated in one season each of track and swimming in high school, so my cartilage couldn’t have possibly worn out already. On top of that, given that I fatigued fairly quickly, my overall endurance was pretty low.

And then, there was the insomnia. I had started taking over-the-counter sleeping pills in college since I couldn’t seem to stay asleep through the night. Eventually, they quit working for me and I had to switch to a different kind. Those too became ineffective over time, so I upped the dosage. For twelve years, I took a sleep aid before bed, whether it would work or not. One night, mad at myself and at God for my dependency, I decided to forgo my Unisom ritual. I slept for three hours. Try as I might, I could not fall back to sleep. So I laid in bed, awake, until it was time to get up for work the next morning.

For my job, I worked as a traveling medical technologist, which I enjoyed for the most part. I liked the variety of work environments, doing different tasks and using different equipment, and of course traveling throughout the United States. The job market for my profession went through a bit of a flux during the Covid-19 pandemic, from layoffs, then the high demand for healthcare workers and crisis pay, and back down to fewer opportunities and lower pay. The contract that I had secured for the Spring of 2020 was actually cancelled two weeks prior to me starting due to a reduced need for staffing at the hospital. I did, however, manage to find another position in California a couple of months later. In summary, taking temporary assignments isn’t the most stable career, but I wouldn’t trade it for being stuck in one place forever.

Back to the topic of job stability, I hit a big bump in the road when my contract at a hospital in Savannah, Georgia was cancelled on my second day at the facility. They at least had the courtesy to give me two week’s notice so I had a little time to try to find another position. I was determined not to sacrifice my well-being for the sake of a job, and I refused to do any more night shifts. My insomnia was bad enough; sleeping during the day was even more difficult than trying to sleep at night. Because of my schedule preferences, I wasn’t able to land my next assignment right away, so I decided to take a leisurely road trip across the southern US and hang out in Arizona for a while. It was January of 2024, and after a month of being unemployed, I finally was offered a 13-week contract at a hospital north of Seattle. Conveniently, I had relatives in the Spokane area, and they welcomed me to stay with them until my assignment was set to start in early March.

Back to the gut issues. Once I was settled in at my aunt and uncle’s house, I gave them my disclaimer that no offense to their cooking or anything, but I was really picky because a lot of things didn’t make me feel good. My mom had even called me before my arrival, as my aunt had asked her what kinds of food I like to eat. “Tell her I hate eating,” I replied. “Eating makes me want to die.”

Naturally, my mom was aware of my chronic stomach issues and other problems, and had been telling me for years to see a specialist. Although I had considered it, I never followed through, given my stubbornness and less-than-stellar past experiences with providers that weren’t able to fix me. She still encouraged me to write down what I ate to see if I could try to figure out what upsets my stomach the most, and to eat foods with less additives and preservatives. I had given up on that too. There was too much that disagreed with me.

My aunt, not previously knowing all this about me, was suddenly very interested in my symptoms. Her son, one of my cousins, had Celiac’s disease, and my symptoms sounded all too familiar. Her daughter also had similar issues but did not have a confirmed diagnosis (she had gone gluten-free for some time and started feeling better, and did not want to reintroduce gluten just for confirmatory testing). “I think you have Celiac’s,” my aunt told me. “You need to get tested.”

Relieved that I might finally find the root cause of my troubles, I looked into testing for the disorder. I decided my first step, the easiest for me, would be to have bloodwork done that specifically tests for antibodies produced in individuals with Celiac’s. I opted for a home collection kit offered by Everlywell that screened for the condition, since I didn’t have insurance coverage yet from my new employer and it was something I could pay for out-of-pocket. (And I will admit that I’m a complete wuss when it comes to invasive procedures like endoscopies, which I would need down the road if the screening warranted it.)

Within a few days after placing my order, I received the package containing everything I would need to collect my own dried blood samples and mail them to the laboratory. The process was straightforward, with clear instructions provided. The hardest part was waiting for the results.

One week later, the screening was complete. I shouldn’t have been surprised that my results came back abnormal, but it still took awhile to fully sink in. I had started eliminating gluten from my diet once I had collected my blood sample (my aunt had told me to continue eating the ingredient in question up until then in order to prevent a false negative), yet from that day forward it would have to be none whatsoever.

I was incredibly fortunate to have my aunt as a resource starting out. Gluten is in so many things besides bread, it’s no wonder I was never able to figure out exactly what was behind my issues. Factor in cross-contamination, and it will begin to look as if almost nothing is safe. I am still learning, but I am a lot better off than I was before, that’s for sure.

Life After Gluten

My new-ish way of life took some getting used to, particularly spending three times as much time and money at the grocery store, checking ingredient labels and searching for the certified gluten-free symbol on (in my opinion) unfairly overpriced products. But believe me, it was more than worth it. Within days I was feeling astronomically better, better than I had in years. I could hardly believe it. Over half of my life I had been living in chronic pain, and just accepted it as the norm. Pain is not normal! It is a sign that something is wrong and needs attention! Unfortunately, I delayed my own diagnosis for no reason other than I thought no one would be able to pinpoint the problem, let alone provide a solution. And while there is no cure for the life-long condition, it can be managed by following a strict gluten-free diet (which isn’t always easy either).

I cannot stress enough the importance of getting tested if you believe you or someone you know may have Celiac’s disease. Left on its own course, the autoantibodies created by the body can cause extensive damage, and lead to further complications, such as nutritional deficiencies due to impaired function of the small intestine, neurological disturbances, even cancer. While I was initially downhearted with my diagnosis, I was relieved that now I at least had an answer so I could start making changes and moving in the right direction. I’ve hit a few bumps, but as I take it one day at a time, it gets a little less overwhelming.

My gut was trying to tell me something was amiss, but until I stayed with my relatives in Washington, I only knew that I was somehow broken on the inside and it seemed like there was no hope. It was a miracle that I ended up when and where I did. Had there not been a toss-up with my jobs that took me from one side of the country to the other, I would probably still be clueless. Everything truly does happen for a reason, even if you don’t know why at the time.

I’ve taken the first few steps on my new journey and the path to healing, and I know I’ve got a long way to go. My goal is not just to learn how to live with Celiac’s, but to thrive with it. How are you going to face your challenges?