Going Gluten Free, Part 3: Chronic Pain, Celiac Disease, and Compassion

This is Part Three. You can read Part One here and Part Two here.

Dear Joey,

Food was a fickle friend in those days. 

Chronic pain played with my mind and told me something wasn’t wrong, but was miserably, dangerously wrong. Food was certainly connected to the symptoms somehow, and eating gluten-heavy foods certainly seemed to trigger the problems. We learned the hard way during an anniversary trip that summer. 

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.


A rare smile during our difficult trek through the City during our anniversary trip in 2013

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 wouldn’t go away after that. I functioned as best I could, operating out of necessity even as anxiety about the whole ordeal worsened.

That’s when I stopped eating gluten and went to see the Gastroenternologist.

The visit wasn’t nearly as helpful as I hoped. The doctor’s cavalier attitude toward my symptoms left me feeling slighted. I had been 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 treated me so poorly 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. IBS felt too weak of a diagnosis. Removing 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.

The blood test for Celiac Disease came back negative; I was too scared to have the subsequent sigmoidoscopy; and I was more confused and panicked than before. My symptoms continued to worsen. 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.


Mia and Addie in August 2013

With no other options to speak of, I started the FODMAPS elimination diet. 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.


The Louisburg Cider Mill in November 2013

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.


Addie’s 3rd birthday – November 2013

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 was too tired and overwhelmed to care. I didn’t attempt the FODMAPS elimination diet again.


Thanksgiving 2013. I passed on pie that year, but ate a lot of Turkey.

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), or not a true picture of what was really going on in my body (the test was done after I removed gluten from my diet). Either way, he didn’t want to retest me for Celiac Disease because that would mean deliberately 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. I heeded his words, and everything changed. Read about how here

One thought on “Going Gluten Free, Part 3: Chronic Pain, Celiac Disease, and Compassion

  1. Pingback: A Tale of Gluten Freedom, Part 4: The Resolution – Love, Scratch

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