I scoffed at the gastroenterologist’s recommendation for the FODMAPS elimination diet. I didn’t appreciate having a one-size-fits-all solution shoved into my hands, and her cavalier attitude toward left me feeling slighted. I was certain she did not care that I felt desperate for someone to help me figure out why my body was turning on me. It took months for me to muster up the courage to make an appointment to see her in the first place, and revealing such private details about my ailing body to someone who didn’t seem to care at all left me feeling exposed and foolish. I walked out of her office a confused mess of frustration, a not-so-healthy dose of self-abasement teeming through my veins.
That was in August 2013, a good month after you took me to the ER to see a doctor friend of yours one weekend when I was more sick than perhaps I had been before. The doctor did an ultrasound of my abdomen that showed an inflamed appendix, but the inflammation was just under the threshold for appendicitis. Besides that, the tests showed that essentially, nothing was wrong with me. He gave me a hefty shot of Dilaudid to ease the pain and help me sleep, then sent me home in your care, advising you to bring me back if the pain intensified any further.
After that encounter, I couldn’t put off a trip to the gastroenterologist any longer. But then she treated me so poorly that it took me two months to get up the gumption to actually follow through with her suggestion of the FODMAPS elimination diet. I did, however, start avoiding wheat immediately because despite her doubts that gluten made me sick, avoiding the stuff made me feel better. Of course, the degree to which avoiding it actually helped ease my aching belly was minimal at best. I had a really hard time accepting the idea that any sort of food–wheat in particular–could be causing so much pain because I ate wholesome, healthy, organic foods (for the most part, at least). And so, I kept right on baking magical no-knead bread, scooping out batter for whole wheat banana muffins, and baking pasta casseroles oozing with gooey cheese. The FODMAPS information from the doctor sat on the counter untouched, eventually buried under junk mail, recipe clippings, and receipts.
But then I started thinking about that weekend we spent in San Francisco in August that same year, just two weeks before I saw the gastro doctor–and what a fiasco it turned out to be, and how probably it had to do with the foods I ate with abandon in the first few hours we were there. We left the girls at home with my parents and practically sprinted out the door toward San Francisco and a whole weekend wandering around the city without schedule or responsibility. We lived it up, starting with dinner at the Tonga Room, a convenient choice since we were staying at the Fairmont Hotel. We shared a Smuggler’s Golden Cocktail for two and feasted on crispy Mongolian Beef, surrounded by island kitsch and happy to feel like us again.
We lingered over buttery croissants with jam and mugs of steaming hot coffee the next morning before heading out the door to walk the city. We hadn’t been gone for more than 15 minutes before my belly screamed at me, its anger sharp and hot. I mentioned it to you, but I was in a sort of denial when you asked if I felt like I needed to go back to the hotel. To ruin our first completely kid-free day in forever (or more rightly, ever?) was more than I could handle. I was determined to enjoy myself, but as we got farther away from the hotel, I panicked. I trudged on, sweating, choking back tears, and desperate for a bathroom. I finally ducked into one down near the Ferry building and tried very hard to pull myself together.
We kept moving forward, climbing hills and winding our way down Lombard Street. You took in the views while I focused on pushing myself to make it up the next hill, slowly putting one foot in front of the other while waves of pain and sweat ebbed and flowed. We finally made it back to the hotel and I slept. Somehow I managed to slip on a dress and head out the door in time to make our reservation at our beloved restaurant Michael Mina. I nibbled on an innocuous fish and rice dish while you enjoyed something much more exotic, like the squid ink pasta you so loved the first time we went there. We headed home the next morning, me feeling guilty and very sick all at the same time.
The sharp pain and strange, gnawing ache never went away, but it eased up and soon I was back to my “new normal”–still in pain, but able to function even as anxiety about the whole ordeal worsened. That’s when I finally took myself in to see the Gastroenternologist. And like I said: after talking to her, I was upset that she seemed to think IBS was to blame for the state I was in that summer, and taking things like apples and onions out of my diet to see if they were the potential trigger for all this madness stirred up anger inside of me. Even so, there was no denying things weren’t getting any better, and really: they were getting worse. My head spun with fear and panic. I felt death was coming for me and no one was the wiser. I pleaded my case to God, tears running down my face as I rocked Mia to sleep in those difficult days: Please don’t take me away from her. From them. They’re just babies.
And so I finally faced the FODMAPS elimination diet because what else I could do at that point? In a moment of clarity (or sheer desperation), I admitted to myself my body could not deal with this on its own without my intervention. I got right to work on a six week long program of clearing Fermentable Oligosaccharides, Disaccharides, Monosaccharides and Polyolsstarted foods from my diet (which basically meant I had to eliminate wheat as well as onions, garlic, tomatoes, apples, dairy products, beans–and many, many more). I planned these six weeks poorly, though, because we climbed on an airplane to Kansas during week five, and somehow thought I could keep up the strict diet while visiting friends and family in America’s bread basket. Everyone was understanding and accommodating as best as they could be, but I panicked and ended up spoiling the whole thing.
It was the middle of Fall and so of course we went to the Louisburg Cider Mill for Apple Cider donuts. And I made chocolate chip pancakes for breakfast on Addie’s third birthday while we were at your dad’s house because that’s what we do on birthdays around here and you know I’m all about tradition. Up in Kansas City we took the easy way out and ordered pizza for dinner, and while I got gluten free crust, I was ill-informed about cross contamination in those days. Plus, it had cheese on it. And sausage. And onions and mushrooms and peppers and so many things that I was supposed to slowly reintroduce after the six weeks were over. The effort I put into keeping all these potential IBS triggers out of my body came were for naught when so many potential triggers flooded my digestive system all at the same time.
I came home feeling miserable and not any closer to really knowing why. But I balked at doing the six week elimination over again because it was hard, particularly because it meant I was cooking two meals three times a day or so, and I was too tired and uninspired to keep up with that nonsense. Gluten was an on-again, off-again sort of companion, and I didn’t care, really. I was too tired and overwhelmed to care. I didn’t attempt the FODMAPS elimination diet again.
Not surprisingly, my body protested and started screaming at me again. The gnawing, ever-present pain intensified (just like it always did) and since I already sort of knew wheat was somehow responsible, I kicked it to the curb and eliminated grains and legumes and dairy again, too (because we gave the Paleo diet a try for awhile, hoping it would heal my gut and make things better). My symptoms improved, meaning the pain was tempered and didn’t yell at me the way it had when I ate wheat with abandon. But the pain didn’t go away completely. And some new symptoms emerged, symptoms that reinforced my idea that death was coming. I started bleeding. I told you through tears, and you gently urged me to call another specialist who happened to be a new colleague of yours–another gastroenterologist, someone you didn’t know when I first started having all these problems but who you believed would nonetheless listen well and help me. You were right.
When I talked to this other specialist, he listened well. When he asked clarifying questions, he looked me in the eye with the sort of compassion for me and belief in me that I needed. After much back and forth, he said my symptoms were consistent with Celiac Disease, but my negative blood test indicated it was more likely Non-Celiac Gluten Sensitivity. However, he emphasized my test could have been a false negative (apparently, they happen), but he didn’t want to retest me for Celiac Disease because that would mean dileberately putting gluten in my body, something he was not wiling to do (“It’s just too risky,” he said.) He scheduled me for a colonoscopy to make sure there wasn’t something else entirely happening inside, and as I got ready to leave, he told me this: Never eat gluten again. Live as if you have Celiac Disease.
The authority and compassion in his voice changed something in me. I felt heard, affirmed, and decidedly not crazy. And so, I heeded his words–everything changed.