My Celiac Story

Part 1: Before the Diagnosis

I haven’t written much about celiac disease. I haven’t been avoiding it. I just don’t think that I’ve been ready. I was diagnosed six months ago and, until recently, I’ve been somewhat oblivious and somewhat in denial about what a huge impact having celiac disease has had on my life. But, this is changing. I’m discovering the freedom that comes with living gluten-free. I’m discovering energy I never knew I had. I’m discovering a passion for fresh, local fruits and vegetables and the pleasures of healthful, from-scratch cooking. I’m rediscovering life. And I’m enjoying every minute of it. This post is long. But it tells a story I needed to share. This is my celiac story…

Some days were worse than others. Usually, I would simply feel a constant, dull ache in my lower abdomen – an ache to which I had grown so accustomed, I hardly even noticed it or paid it any heed. Other days, I would lie on my bed, bloated and in pain, hand on my tummy, wondering if perhaps I shouldn’t have had that post-dinner coffee or that entire helping of fruit crumble. Little did I know that I shouldn’t have had that toast and cereal, those crackers, that sandwich or that dinner roll. I had no idea that the food I was eating on a regular basis was making me sick. I had no idea that I was malnourished and nutrient deficient. I had no idea that I was cranky and irritable because my body was rejecting gluten (the protein found in wheat, barley, rye and some other grains) and that my small intestine was being damaged in the process. I had no idea.

I never thought that anything was wrong with me. I never even considered that my stomach pains could be anything more than “normal” indigestion and, therefore, I never even considered going to the doctor. It sounds ridiculous but I honestly didn’t know that not everybody experienced pain after eating! I was often saying that I didn’t feel well or that my tummy hurt but it was always so easy to blame my discomfort on something else. Like stress from exams. Or stress from moving. Or diabetes. Or something I ate (if only I’d known…).

I was concerned about how tired I felt, but, once again, this was so easy to blame on other things, especially my diabetes. I would convince myself that my exhaustion was caused by my high blood sugar reading that morning or by last night’s 3am low. Looking back, I can hardly grasp how completely daft I was. Yes, roller-coastering blood sugars result in fatigue but not the kind of absolute weariness I was feeling every single day. Plus, my sugars weren’t that out of control. No, I was too tired. I was exhausted, worn out, tuckered and run down.

All. The. Time.

After dinner, I couldn’t even summon the energy to clear the table, wash the dishes or sweep the floor. I was too tired to do anything but lie down. It was all I could do to trudge from the table to the futon, flop down with a pile of blankets and pillows and settle in for a night of movie viewing. After months of exhaustion, this had become my routine. This had become my reality. But I still didn’t think anything was wrong with me. I had forgotten what it felt like to have energy. I had forgotten what it felt like to feel good. Daniel and I used to go for walks after dinner. We used to go out for coffee and dessert. We used to go to parties. We used to go on bike rides. We used to do more. More than this. At least, I think we did. Didn’t we?

To tell you the truth, I wasn’t sure. My symptoms had crept up on me so slowly that I’d forgotten what it felt like to feel healthy. The transition was slow. Gradually, over the past five or six years, my energy level had waned, my stomach discomfort had grown, my anxiety levels had increased and I had slipped into a nearly imperceptible state of depression. I wasn’t miserable. I knew I had a good life. I was grateful for my wonderful husband, my charming cat, my friends and my supportive family. But, despite this, I wasn’t particularly happy. I used to find pleasure in the world around me. The sunshine glinting through the windows, a bowl of freshly picked strawberries, the soft sound of rain on the cedars. But at some point, that had changed. Without me realizing it, a shift had taken place. I was different. I was living in a sort of fog. Too tired to drink in the world around me. Too tired to feel really happy. Too tired to really care.

Part 2: Couldn’t the Lab Have Made a Mistake?

When I was initially told that my bloodwork had come back positive, I was confused. I was upset. I hadn’t even realized that I had been tested for celiac (oddly enough, my doctor can’t even remember why he had me tested). So, when I went to my endocrinologist’s office for my tri-annual check up, I was absolutely not expecting to be casually informed that I might have, in addition to diabetes, another autoimmune disease.

“Autoimmune diseases tend to cluster,” my endocrinologist informed me. “You’ll need to have an endoscopy and small bowel biopsy to confirm diagnosis but your TTG levels were off the charts. A lot of people with diabetes also have celiac.”

I felt overwhelmed. I felt alone. One moment, I was perfectly content in my state of obliviousness. The next, I was fighting back tears and trying to wrap my mind around the fact that another chronic illness had crept its way into my life. I had no idea how to act or how to respond. Almost immediately, I entered a state of denial. This isn’t so bad. Not nearly as bad as diabetes. So, I can’t eat wheat. Big deal. This is going to be easy. I’ll read food labels a bit more closely. I’ll avoid gluten, I’ll forget about celiac and life will return to normal. Oh, how naive I was!

When I finally responded to my doctor, I tried to sound strong, nonchalant, as if I received this kind of news everyday. I asked, “Couldn’t the lab have made a mistake? Maybe I should have the bloodwork done again. I don’t want to have an endoscopy if it isn’t necessary. The lab could have made a mistake, couldn’t they?”

But I already knew the answer. And on my way home, I cried.

Part 3: Toward a Gluten-Free Life

Three weeks later, sedated and wearing a hospital gown, a friendly, bespectacled gastroenterologist eased a tube down my throat to take a tissue sample from my small intestine and to take some photographs of my GI tract.

When I try to remember the day of my endoscopy, faint snippets of memories come in and out of focus, enshrouded in a blurry fog…

…I remember the nurse trying five times before she successfully inserted my IV…I remember my blood sugar cooperating, hovering around 7mmol/L all day, even though I didn’t ingest anything for almost 24 hours…I remember a friendly old man waving to me from the hospital bed across the room, giving me a thumbs up as I was wheeled into the procedure room…I remember crying and gagging during the endoscopy when the sedative they’d given wasn’t strong enough…I remember feeling cold…I remember Daniel holding my hands and rubbing my feet, his voice washing over me as he read out loud from the pages of his book…I remember Daniel inserting test strips into my meter and helping me poke my finger…I remember Daniel calling my mum and holding the cell phone up to my ear so I could say a groggy hello…

I don’t remember being told that I should start on the gluten-free diet immediately or that I’d have a follow-up appointment with the gastroenterologist in about a week. I also don’t remember being told that I shouldn’t operate any heavy machinery or ride a horse. Daniel remembered those parts for me. And when we got home, Daniel made me a bed on the futon, gathered all my favourite movies and baked me some flourless peanut butter cookies. It’s important that you know that Daniel is not a baker. However, those flat, dilapidated cookies were some of the best I’ve ever eaten. I hugged him and I cried. Those cookies represented my first step toward a gluten-free life.

Part 4: What it Feels Like to Feel Good

How can a person live years without knowing what it feels like to feel good?

After six months of living gluten-free, I’m finally starting to feel like myself again. That girl who had been pushed aside, veiled by years of malnourishment, discomfort, irritability and depression, has finally reemerged. I feel better than I have in ages. I feel capable and strong and inspired. Before my diagnosis, a single trip to the grocery store would sap my energy for the day. I would dread weekend visits from family or friends, not because I didn’t want to see them, but because it would exhaust me and the whole next week would be spent recovering. Before my diagnosis, I would ration my activities, planning only one “big” outing a day. Thankfully, things have changed.

Now, I fill my days with the things I love. I do my work writing, editing and researching at the local library or at cafés downtown. I go for bike rides and visit farmers markets, purchasing beautiful fresh, local produce. I cook with my husband. I browse book stores and go to the movies and busk on street corners, joyfully singing for anyone who will listen. After dinner, I clear the table and do dishes and sweep. I go for evening walks and drives and bike rides. And Daniel and I go out for coffee and dessert. Of course, at the end of the day, I am tired. But this tired is different from the tired of undiagnosed celiac – the tired I experienced for so many months. This tired is a pleasant sort of tired. An accomplished sort of tired. A kind of tired I haven’t felt for years. This is a kind of tired that makes me want to curl up in bed with a good book and a cup of tea and look forward to all the wonderful plans I’ve made for tomorrow. Plans I know I can accomplish with my new level of energy and new outlook on life.

When I tell people that I can’t have gluten, their first response is often one of pity or sympathy. Let me just say, I do not need sympathy. I don’t mind that I had to give away my baking sheets and wooden spoons, my bags of wheat flour, cans of soup and my boxes of over-processed cereal. I really don’t mind that these items have been replaced with new, uncontaminated kitchenware, bags of teff and almond and sorghum and rice flour, containers full of homemade soup made with local vegetables and a big bag of organic, whole grain puffed brown rice cereal. I really don’t mind. Eating gluten-free is making me healthy. My body is healing. I am finally getting the nutrients I need from the food I’m consuming. I’ve never eaten so many fresh vegetables and fruits and gluten-free whole grains in my life. I’ve never found so much pleasure in food. Daniel and I are trying recipes we would have never considered before going gluten-free. Each week we try something new. Coconut vegetable curry, homemade arepas with local, field tomato salsa, mushroom risotto, chickpea and spinach soup, quinoa salad, homemade raspberry jam with homemade sorghum bread. There are so many things to try and taste and enjoy! As I said before, I feel as though I’m rediscovering life. I feel capable and strong and inspired. Yes, it’s a lot of work to read food labels for hidden sources of gluten, call companies to ask about cross-contamination and drive to four different markets to get all the gluten-free flours and products that I use. But, it is well worth it. I haven’t felt this good in years.