It would start with a belly rumble, just an innocuous sound and a clenching of the stomach that, for most people, could signal a number of things to come. But for me, it usually meant that hours of discomfort and nausea were about to pummel my digestive system, for what seemed like absolutely no reason.
Starting in the summer of 2008, I began to experience intestinal distress with alarming regularity.
I remember being at work or back in school in the fall thinking that there was no possible way for me to continue sitting at my desk, pretending to be a normal and functioning human being, when all I wanted to do was run into the bathroom and either burp, throw up, or poop. Maybe all three at once.
What was more frustrating was I never ate anything strange that I could attribute these attacks to, and they were becoming decidedly less random and more of an everyday occurrence. No change in diet, no mixing of alcohols or over- or under-eating could explain why I would sometimes get so bloated it was difficult to breathe.
At times, it felt like my stomach and intestines were ganging up on me, expanding and exerting their force onto my heart and lungs. It would feel like I was being suffocated from within.
Then there was the gas. The burps are what I remember most. I would have been able to enter a belching contest with the best of them, and probably win (in both the length and auditory categories specifically). It was embarrassing, and if I was in a public space, I did my best to contain it -- which only made me more uncomfortable.
And no one could explain why this was happening to me. I went to visit a clinic to see if a doctor could find a reason, and he sent me away with a sample pack of Nexium in spite of me explicitly stating that it did not feel like heartburn.
Once I returned to school in the fall, I tried visiting the doctor on campus and explaining my symptoms, but he cut me off mid-sentence to again suggest heartburn, acid reflux and irritable bowel syndrome. At my insistence, he ordered some blood work, and included a test for celiac disease on the requisition after I mentioned that my uncle has the autoimmune disorder.
He didn’t explain to me that the blood tests for celiac are not exact, nor did he mention any of the other options for testing I had. I assumed that since the information was coming from an authority figure, and one with a substantial amount of education and experience, that he was giving me the whole story.
The test came back negative, and I continued on with my life. The attacks became less frequent and less severe, so I wrote it off as having a sensitive stomach and did my best to not piss it off further.
Fast forward to 2012, and suddenly “celiac,” “gluten,” and “wheat belly” are buzz terms. All kinds of celebrities have started endorsing the gluten-free diet as a way to cut out inflammation in the body and lose weight (think Gwyneth Paltrow, Victoria Beckham, etc.).
I tend to scoff at “diets” (Atkins, Jenny Craig, et al.) because while I know they can work for a lot of people, I think they also can encourage unsustainable and unhealthy lifestyles for the sake of weight loss. Admittedly, I’ve never had a weight problem, so I don’t vocalize my opinion on the matter much -– honestly, how the hell would I know?
So, all the talk of this new “gluten free” fad inevitably went right over my head.
But after I moved to Calgary this summer, I unknowingly found myself in the centre of a gluten-free complex. In a four-unit building, two of the four houses were living gluten-free, and when me and the girls started to hang out in the yard with a bottle of wine each night, the topic inevitably came up.
Neither of my neighbors have been formally diagnosed with celiac disease. It sounded odd to me to commit so fully to something with no empirical scientific evidence to back it, but both assured me that it made a world of difference in their lives. After a few more conversations with the woman who had been gluten-free the longest, I decided it was worth a try.
After all, in 2008. I never tried a gluten-free diet. I went for my blood test, got my results, and called it a day.
I have now been gluten-free since October 1, 2012, and I have zero regrets about my decision (except for not looking into it sooner).
In the beginning, I did my best to be secretive about my decision, not mentioning it at restaurants to the servers and instead scouring the menu for the item least likely to have been doused in flour. (Hint: if you enjoy pub food as I do, I now know that it’s all laced with gluten-y goodness. This made me particularly sad.)
I wanted so badly to avoid the stigma of being associated with a “fad diet,” or to have to deal with the assumption that I was another woman with body image issues. At 5’3” and 125lbs at my heaviest, I had no business looking into weight loss solutions and I knew it. And while that isn’t what this choice is about, I couldn’t help but feel like anyone I spoke to about my decision was making that judgment against me.
I couldn’t shake the feeling that my choices were somehow invalidated because of my size or my lack of diagnosis. I couldn’t, and wouldn’t, tell a server that I have celiac just to make sure my order would come out right. I said as little as possible, and as a result I’ve had a few uncomfortable evenings after accidentally eating something that was either cross-contaminated, or a sauce that was thickened with flour.
My body’s reaction after going gluten free and then the reactions that I would have after accidentally ingesting gluten (similar to the symptoms I was having in 2008, with more nausea and brain fog) prompted me to do more research on celiac disease. And while I thought symptoms were limited exclusively to what I’ll call “toilet troubles,” I quickly learned just how wrong I was.
The fact that my teeth have little to no enamel may be caused by celiac disease. My seemingly random depression (while influenced by other factors I’m sure) may now have a root cause. Oh, and the anxiety, too. My late onset of puberty, and a failure to thrive as a child? Yep, there’s that too.
In fact, my mother was so concerned with my growth when I was 13 that she took me to my pediatrician for some answers. One quick X-ray of the wrists later and we (kind of) had an explanation: While my chronological age was 13, my bones were only 11.
There are countless other examples, minutiae of my life that have come into much sharper focus now that I’ve done some research. And don’t get me wrong, I’m not advocating self-diagnosis of illness using the Internet. It’s a wonderful, but definitely flawed, place to start.
The knowledge I am hoping to impart with this article is the absolute necessity for women and men to listen to their bodies, and to give them some more credit. Science has told me once that I don’t have celiac disease, but armed with new knowledge I’m going for my second blood test later this month.
And regardless of my results, this is a lifestyle I intend to keep. Feeling better is priceless, and I shouldn’t need to explain my reasons for wanting that to anyone.
Regardless of public opinion or judgment, listen to your gut. I know mine has finally stopped screaming at me.