You can read Part One of A Tale of Gluten Freedom here.
Fast forward about 14 years. We had been married for over two years by then, and we were finding our footing in yet another living situation–the third move in our still young marriage. With two very little girls in tow, we crowded in with my parents and older brother in the house I grew up in with hopes of saving money for a home of our own in the coming year. While the situation was a good one–ideal in many ways–and we were settling into a new sort of normal, the stress of it all took a toll on us.
Just days before Christmas that year, you woke me before the sun came up on the morning we were supposed to get on a plane to go spend the holiday with your mom. In a hushed voice, so as not to wake Addie who shared a bedroom with us at the time, you said you were heading to the emergency room because you were convinced the stomach pain you had been having lately was appendicitis. You kissed me goodbye and urged me to go back to sleep in vain. I lay there worried and powerless, feeling like an abandoned child and a lazy wife more interested in sleep than holding your hand in a waiting room. I was neither, of course.
When the girls woke up the rest of the household that day, my parents willingly watched the girls while I went hospital. When I reached you there, you laughed the whole thing off, amused at your ability to self-diagnose (ever the astute PA you are). But for me, the stress of it pushed my own body to a breaking point.
There were twinges in my abdomen as we drove back over the hills toward home later that night. You had just had your appendix removed and suddenly my own tummy was smarting and radiating with pain. I brushed it off as what I could only assume were sympathy pains, and I ignored them as best I could. They didn’t go away though, and they even got worse. I finally said something about them to you, a bit embarrassed because I figured you would dismiss them as nothing, too. It was a little coincidental that my lower right abdomen would start screaming at me in the hours after your appendicitis, but I couldn’t shake the very real pain I was experiencing. And once more, I didn’t understand why my body was turning on me again with painful problems that played with my mind. I tried to rationalize my way out of it–again–but of course that didn’t help.
You listened to my complaints and advised me to keep an eye on it, telling me I would know with great certainty if it was appendicitis or not because the pain would be unbearable. I lost a lot of sleep as it flared and dissipated over the next week or so. It gnawed at me by day and worsened at night when the darkness turns everything grim anyway. I laid awake most nights, obsessing about the pain, wondering why it was there, convinced something was fatally wrong with me, and worried no one believed me.
While I waited for the CT, we eventually made our way to Washington and enjoyed a belated Christmas with them. I brought my new affliction with me, though, and since the day those pains started I carried them with me in mind and body everywhere. I worried every day. I worried every night. I feared the CT would reveal a fatal problem and I feared it wouldn’t reveal anything at all–because that would mean the pain was all in my head, and that would mean I was crazy, wouldn’t it?
The CT didn’t reveal a thing, so my doctor referred me to a gastroenterologist, a visit that took months to coordinate. While I waited for my appointment day to arrive, I sat with the unsettling idea that my doctor had missed something. As I worried, my grandma came across a magazine article about tummy troubles associated with gluten. She photocopied the page and sent it to me. I read the article, scoffed a bit, and then wondered. I paid attention to my body in a new way after that–what I put into it and how I felt after. I noticed the pain worsened when I ate wheat-heavy foods, but not to the degree that I believed wheat or gluten was the source of the problem. I thought perhaps it simply exacerbated a different problem.
Finally, months later, I sat down with the gastroenterologist and did my best to tell her my story, give her my symptoms, and talk about my concerns. She hardly looked at me, murmured a few brief mmhmms, and asked pointed questions that made me feel like I was on trial. When she asked if I had noticed any particular foods that seemed to make things better or worse, I mentioned what I had noticed about wheat and told her I hadn’t really been eating it lately. She slowly turned from her computer, looked at me over the thick rimmed glasses that were perched on the tip of her nose, eyebrows cocked and flatly said, “What are you trying to say?”
She seemed bothered by my words and I was thrown off a bit because I didn’t really know why a doctor would say something like that. (I was only answering her question as best I could, wasn’t I?). I assured her I was not trying to self-diagnose and I was not saying wheat was the source of the problem. I was saying I noticed when I ate wheat-heavy foods, the pains got worse. They were still very much present on all other days too, though, so I couldn’t make sense of the connection.
After all that, she clicked away on her computer and slowly turned to face me and said simply: “You have IBS.”
She handed me paper after paper of information about FODMAPS, elimination diets, and fiber supplementation. I was somewhere else completely as she spoke–back in High School and those nauseating days where pain and suffering of a different sort plagued me, and I was again humiliated because didn’t I already know this about myself—that I had IBS? But if that was the problem, then why didn’t dairy trigger the problem like it used to? These new pains were very different than bloating, cramping and nausea that betrayed the lactose intolerance of my younger years. I was snapped back to the present when the doctor told me she was reluctant to order a test for Celiac Disease. She told me she was certain that I did not have it, but would order it anyway. She stood up, opened the door, and as she went, she urged me to follow the FODMAPS diet for six weeks and see how I did with wheat after that.
I didn’t do well.