How did you know gluten was your issue?

I get that question, or some version of this question, a lot. Especially when I’m out to eat which is really the worst time to share these details. So this is my story.

The rest of this article contains many gross details about my bodily functions. Proceed at your own risk.

Jan 2021

About 3 hours into the 5 hour drive, he asked me to pull over. “Tricia, please, you don’t look well enough to drive.” Another hot tear streamed gently down my cheek and fell onto my lap. “I’m fine” I replied, “This happens to me a lot, you just don’t see it when I’m working, my stomach feels like it’s burning but it usually doesn’t last for too long.”

I was too excited to stop anyway. Although I was physically in pain, I was on my way to pick up my very first puppy. It was a long day of driving and I didn’t want to stretch it out any longer. I ate another Wheat Thin. Wheat Thins and ginger ale were all I seem to be able to get down these days. I wasn’t interested in eating, I couldn’t drink as much as 4oz of alcohol without getting ill, the thought of ingesting anything made me nauseous, but crackers were bland enough to choke down.

As my stomach pain eased, my thoughts drifted to my time at Penn State as a nutrition major, my mind frantically searching the nooks and crannies of my brain trying to think. The endoscopy showed I was wrong about my first hunch — it was not a stomach ulcer causing my daily stomach issues, meaning I was back at square one; no diagnosis.

There’s no way… it couldn’t be… but I suppose it’s worth it to try… I can’t keep living like this.

***

The next day, exhausted from the chaos of our first night home with a puppy, I started down the WebMD symptom checklist for Celiac Disease. Diarrhea? Check. Bloating? Check. Gas? Check. Fatigue? Check. Belching? Check - I thought gas covered this but YES. Diarrhea? Daily. Nausea? Vomiting? Flatulence? CHECK — How many ways can we talk about this? Itching? Check. Anxiety and depression? Check.

“Crap.” Literally.

I told my boyfriend, “I’m going to try removing gluten from my diet and see if that helps my stomach.”

“Okay… I don’t really know what that means, but I’m willing to try anything you think will make you feel better” he responded.

“Gluten is a protein found in wheat, barley, and rye”… and I could see his eyes start to glaze over as I rambled nutrition facts at him. “Basically, I am going to cut out bread based things and see how I feel.”

“Bread could cause you to feel this sick?”

“It also might help me fart less. Remember when the Ultrasound technician couldn’t find my left kidney and she thought it was because I was so full of gas? This might be why!”

“I’m pretty sure you’re just gassy” he smirked.

***

The next week, I scheduled an urgent appointment with my physician assistant. I sat down in the waiting room, smiling at the elderly couple sitting in the chairs across from me before realizing I had my mask on. They called my name and I jumped up, much too eager, but even my awkward-ness couldn’t dampen the joy of a hopeful spirit.

When the nurse took me back, she asked what I was coming to see the doctor about today.

“I think I have a gluten issue — Celiac disease or intolerance or an allergy to it. I cut it out and I have seen a dramatic difference in my body. I had been in before to see her with my stomach upset and now I think I know why”

“Okay, so you aren’t currently experiencing any symptoms?”

“Correct! As long as I don’t eat gluten”

“Okay. I will make a note and the doctor will be right in.”

The Physician Assistant I had just started working with when I moved here a few months ago came in. She sat down with her laptop, crossed her legs and asked me why I was there.

“I think I have a gluten issue — Celiac disease or intolerance or an allergy to it. I cut it out and I have seen a dramatic difference in my body. I’ve been keeping a food log, and looking at my previous blood test results…”

“So, let me make sure I understand, you aren’t feeling sick right now?”

“Exactly! For the first time in months I feel better and it’s only when I don’t eat gluten.”

“Great! Well, then keep eating a gluten-free diet!”

“Isn’t there more to it than that? An official test? Doesn’t it matter if I am really Celiac or just gluten intolerant? Couldn’t this be leading to other issues that we should be checking on like osteoporosis?”

“Look, I want to be honest with you, I don’t have a lot of experience with gluten-free or Celiac issues. If you had diabetes or strep I could help you but this is out of my wheelhouse. I can help you google it if you want.”

I can help you Google it if you want.

The ballooned hope I had carried into the room with me suddenly burst. As soon as I could, I excused myself from the conversation and drove home. Those hot steaming tears streaming down my face again, but this time it wasn’t my stomach pain bothering me; it was my first taste of gluten ignorance and it left me deflated.

***

While I found myself feeling physically better without gluten in my diet, everything I learned from my studies told me I needed to follow up with a physician. I had lost about 15lbs in the past month, wasn’t able to get much of an appetite, plus I was always exhausted.

A few weeks later I saw a GI specialist who agreed to try a blood test for Celiac disease, and assigned me a 4 week diet of gluten containing foods — the only way that test would be able to pick up the bioindicators was if the body was having a current response.

Within 3 days of eating gluten my symptoms were back full-fledged; tear inducing stomach pain, 4am bathroom calls, irritability, even depressed, suicidal thoughts. In those morning hours I would desperately hope to fall back asleep before the next urge to expel the food from my body.

I can’t do this anymore.

***

“I’m gonna be a big old meany and torcher you today. It’s my favorite thing to do! Come on in!” My new doctor playfully greeted me at the door. He proceeded to introduce himself and review what I had told the receptionist while setting up the appointment.

“So let me get this straight, your GI symptoms, along with your depressive/suicidal thoughts are coming back after only a week of being back on gluten? No more gluten for you — at all. It’s not worth the risk and you are actively doing more damage to your gut.”

As those words filled the air, my gut knotted up for a different reason. A mix a relief, uncertainty, and loss washed over me. While it was true I felt better without gluten in my body, the idea of never having my grandmothers homemade blueberry buckle cake or passing along my boyfriend’s family biscuit tradition I’ve come to love was a lot to take in.

Will I be able to control my cravings for gluten containing foods better than I control my sweet tooth? Will I be able to find any gluten-free options that I think taste as good as the original foods I’ve loved my entire life? Will my boyfriend be willing to alter all of our meals and social events as I remove this dietary staple from my life?

My head racing, I started trying to imagine the future, erasing the orange cranberry bread my aunt Kris makes on Thanksgiving morning, the white cake I always imagined my future groom wiping on my cheek on my wedding day, the Christmas morning cinnamon roll tradition I pictured passing down to my future kids. All at once everything was different, although nothing had really changed yet.

***

March 2023

I am now much happier than I ever imagined living gluten-free. To my surprise I found fantastic local gluten-free bakers who can make anything I am craving gluten-free, including AMAZING cinnamon rolls. Plus in the past few years more big-name brands have started offering gluten-free options at grocery stores, like Oreo and Snyders Pretzels.

I have also learned so many gluten-free tips that I created a few free online courses for others! Check them out here.

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