A Diagnosis: Becoming Vegan and Gluten-Free
In early June of 2010 I was diagnosed with rheumatoid arthritis. I was only 28 years old. Two weeks later I learned that I was pregnant with our first child.
The arthritis began years earlier, when I noticed tenderness and swelling in the lowest joint of my right index finger. At 22 I thought the swelling was a result of holding my cell phone too tightly while spending hours talking to Mr. B (a long distance relationship meant lots of phone time.) I taped the finger to the next one and bought a hands-free ear piece. After several weeks the swelling went away and in my mind the problem was solved. Over the next six years the swelling would recur several times. However with new cell phones every two years I always thought the pain was simply a result of overuse. I would buy an ear piece that worked with my current phone and try to use my finger less. By 2010 the swelling refused to go away. After months of religiously using an ear piece every time I was on the phone, I began to think that something else might be wrong.
I brought the issue up with Mr. B, and he felt my index finger, surprised at the heat radiating from the joint. It was swollen to twice the size of the joint on the opposite hand, appearing red and disfigured. I made an appointment with our family doctor and went in for blood work and an exam. The resulting diagnosis of rheumatoid arthritis (later confirmed by further testing and a specialist) was the last thing I expected. No one in my family has a history of rheumatoid arthritis and it never crossed my mind that the problem was anything beyond overuse or injury. The doctor knew that we were trying to start a family so he simply injected the joint with steroids to relieve the pain. Medications would have to wait until after the pregnancy.
With the pain diminished and the swelling reduced I went on with normal life. The only indication of the arthritis was a lingering redness and a bone spur on the joint. I chose to focus on the more exciting time of pregnancy and thought that I would deal with the arthritis once the baby had arrived. The state of denial is a happy place.
Five months into the pregnancy my left hand became stiff from the wrist all the way into each finger. I had difficulty opening and closing my fingers and the joints ached. Once again, I dismissed the stiffness, thinking it was likely caused by a bad reaction to a flu shot I received in that arm the day before. The stiffness disappeared within 24 hours and I went on with life.
Then, three months later, my right hand froze in place. I woke up one morning with a stiffness in my wrist as if I had slept on my hand the wrong way during the night. Over the course of the day the stiffness progressed to swelling and pain- beginning at the base of my wrist and radiating to the tips of each finger. By evening I could not open or close the hand. It was completely immobile and the lightest touch sent shooting pain. Scared, I tried ice packs, heat packs, and anything else I could think of to relieve the stiffness. Nothing helped. The next day I called my rheumatologist and learned that I was experiencing a flare up. The only good news the nurse could offer was that intense flare ups typically disappeared as fast as they attacked, lasting only a few days to a week. Because I was pregnant I could not take anything stronger than two Tylenol for the pain. I could not hold a fork, open a door, or brush my hair. Alarmed and terrified at the thought of living with flare ups I realized I could not wait until after the pregnancy to learn more about rheumatoid arthritis.
Thankfully, I regained full mobility in my hand within four days, but the mental impact was lasting. I realized that I needed to figure out a plan of action right away. I had no idea how I would be able to care for a newborn if I suddenly lost the use of one of my hands, even if only for a few days. I began in-depth research on rheumatoid arthritis, reading books, medical journals, and anything else I could find on the disease.
My treatment plan was complicated not only by the pregnancy but also by my desire to nurse our newborn and have a second child. Mr. B and I are not getting any younger. He has a 10 year head-start on me and we both decided that it makes sense to not wait very long before having a second child. The problem is that the majority of arthritis medications are not compatible with pregnancy and breast feeding. Almost all of the recommended medications will pass through to the baby. Other than additional steroid shots to manage specific joints, there is not much that I can take to prevent and relieve progression of the disease during childbearing years.
Anecdotal evidence of the impact of specific foods on arthritis symptoms and particularly flare ups caused me to dive deeper into the research surrounding diet and rheumatoid arthritis. Now, you know how much we love good food. This website is a testament to our philosophy of eating well and enjoying life. I was not about to modify how we eat based on subjective hearsay or the experiences of random people on the web. In order to feel comfortable with any change, I wanted to see substantial results from scientific studies and research. They say to be careful what you ask for because you just may get it. In the Oxford Journals of Medicine for Rheumatology I found what I was looking for and then some.
In a nutshell, the studies pointed to a significant improvement in rheumatoid arthritis patients who followed a vegan and gluten-free diet. That’s right- vegan and gluten-free. Either one of those diet modifications require a substantial lifestyle change, yet the two combined? The implications for our diet were staggering. I spent weeks thinking it through, researching different angles and studies, talking to Mr. B, and coming to terms with what such a significant change would look like. As someone who lives to cook, eat, and celebrate good food- it was almost more than I could take.
No cheese? No bread? No slow-roasted short ribs? I wanted to curl up in a ball and cry. We hunt, we fish, and I had just spent 18 months learning how to bake bread. How could I possibly transition to a vegan and gluten-free diet? Yet the memory of the flare ups and the knowledge that a child was on the way made me want to avoid future episodes at any cost. With Mr. B’s full support I slowly began to make changes in our kitchen.
I live in South Dakota; the land of corn and beef. Becoming a strict vegan and avoiding all gluten would mean that I could never eat outside of our house. We have an active social life and often join friends for dinner at local restaurants or their homes. My freezer is full of berkshire pork, local beef, a neighbor’s chickens, and grass-fed lamb. I could not bring myself to give away all of that meat and I had no desire to stop joining friends at local restaurants. What to do?
I decided to strike a balance, giving myself the time and space to slowly transition into a new way of eating. I would not buy any additional animal or gluten products for our house. We would slowly work through what was already in the cupboards, rationing it out, so that in any given week I would only eat meat at one or two meals. An exception was made for seafood. Many studies point to the benefit of Omega 3 oils for people suffering from rheumatoid arthritis. In addition to taking regular fish oil supplements, I decided that it made sense to keep seafood in my diet. Living far from the ocean, my access to fresh seafood is rather limited, so I was not afraid of overdoing it. When eating at restaurants or friends’ houses I would work around the menu as best I could, not asking for special treatment or dishes, and now and then allowing myself to simply eat a hamburger or a slice of pizza if the craving struck. Mr. B agreed with my approach and together we embarked on a new way of eating.
Dairy products and gluten were the first things to go. We quickly worked our way through any remaining containers of yogurt and homemade loaves of bread, leaving a gaping hole in my fridge. Looking at the calendar, we picked a weekend to head out of town in search of new ingredients. I printed out lists of items that were both vegan and gluten-free from Whole Foods and Trader Joe’s (thank heavens they expanded into the Midwest). At the stores, Mr. B and I wandered the aisles for hours, looking at everything with new eyes, and trying to navigate through the ingredient lists on the back of every package. I felt like it was my first time in a grocery store. While the selection of vegan and gluten-free foods was impressive at both stores, almost everything on my list was foreign to me. Rice flour, soy yogurt, millet- trying to choose the right brands and products was a daunting task.
Back in the kitchen I felt like I was learning to cook all over again. Pie crusts made from rice flour and oil did not behave anything like my beloved flaky lard based dough. Granola made with millet and sunflower seeds caused Mr. B to say, “This tastes like bird food.” Gluten-free pasta was overcooked and fell apart at the touch of a fork. Rice milk yogurt made me gag, with even Oscar refusing to lick the container. At nine months pregnant, these were not the challenges I had anticipated at the end of my pregnancy. I began searching for recipes and cookbooks to help me navigate these new ingredients. Some websites were familiar favorites and others provided inspiration and resolve to head back into the kitchen and try again. Excellent cookbooks gave me a range of fancy and familiar meals. I learned about cashew cream, amaranth, and the protein power of rice and beans.
I have mentioned before the beauty of Rancho Gordo heirloom beans. With the changes in our diet, I dove into the selection of beans with gusto, ordering one of almost everything to stock my pantry. A bowl of simply cooked Borlotti beans was a revelation. Simmered with nothing more than half an onion and a garlic clove, the beans had a deep meaty flavor that blew my mind. For the first time I could actually imagine eating a bowl of beans for dinner without feeling like I was missing out.
Slowly I began to come to terms with my new approach to food. Mr. B and I made it through the first few weeks of feeling bloated and full-but-not-full from eating a much larger quantity of vegetables and grains. Surprisingly we discovered that the change in diet gave us a noticeable increase in energy throughout the day. To put it simply, we both felt better. The flare ups have not returned, although I do not expect that this will eliminate them entirely. I noticed that the ongoing stiffness in my index finger was reduced to a lower level. If I ever stray too far back into animal and gluten products the swelling increases and I feel it the next morning.
My learning process is still ongoing. I have been very careful to research and understand the nutrition requirements for someone who is pregnant and breast feeding while following a vegan diet. Monitoring protein levels, calcium levels, and ensuring a balanced daily intake of vitamins is very important during this stage of my life.
I waited to share these changes with you until I was certain that it was a permanent lifestyle change. I am not fond of passing diet fads and frankly needed some time and space to struggle my way through the implications for our life before sharing it with others. We still have a lot of meat in the freezer and a few specialty flours that I did not have the heart to throw out. Phoo-d will not change into a strict vegan gluten-free website. However if you notice a gradual move in that direction, now you know why.
As always, I will not use this space preach one food philosophy over another. In fact I am probably one of the only vegans out there who hunts and fishes! I am exceedingly grateful that I do not suffer from celiac disease and can still enjoy a rare slice of sourdough bread without feeling sick. After coming to terms with the diagnosis of rheumatoid arthritis and wrapping my head around a vegan and gluten-free diet, I am now confident that this is not a reason for sadness or feelings of sacrifice. Instead I have been given an urgent reason to permanently embrace a healthier diet and lifestyle. I have the opportunity to explore the world of vegetables and alternative grains, learning about foods that never would have caught my eye before. Together, Mr. B and I will continue to do what we love- seeking out interesting people, places, and food. Our adventures in food and life will only expand from here and we can’t wait to share them with you.