Hey lovely readers! Who’s ready for a verbose post?
I rarely put personal things on my blog, because I’m kind of (okay, definitely) an introvert, and prefer to keep to myself with many things–but it seems apropos to let you all know a little bit about how I became a gluten-free vegan, right? Lately I’ve been receiving many questions asking me everything from why I only post gluten-free recipes to whether or not I think giving up gluten for those who don’t have celiac disease (or a wheat intolerance or allergy) is a good idea. Since I have never really addressed much on this topic, I figure it may be best to do an entire post about how I came to be a gluten-free vegan.
We can skip past most of my childhood, go over a few details, and jump to when my doc thought that my celiac disease was “triggered”. The funny thing about this condition is that you can have it sitting dormant in your genes for a while, and then something traumatic can bring it on, such an accident or sudden illness.
I had a good childhood: my energy levels were high, my mind in good spirits, my family very loving. I was surrounded by my older siblings and very ambitious parents, guiding me toward the path of a happy, healthy life. My father was my world; when we were together, we just clicked. I always felt as though, no matter how young or naive, my dad treated me as an equal. He’d even humor me in debating whether or not cats were smarter than dogs (a subject that often was exhausted by both of us) and he taught me the importance of compassion–both to other humans and animals. He aided me in fostering strong and happy friendships that I still carry on today–wonderful, solid friendships that may have never formed without his constant willingness to make it happen. My mother, although not around much when I was a kid since she was going to school full-time, was ambitious as hell, and once I was born she was determined to resign her hairdresser nametag and become a doctor. And she certainly did. She inspired me to go after whatever the heck I wanted, and that it was never too late to get started.
Even though most of my childhood was pretty carefree and healthy, I did have a few bouts of sickness, and my medical record was less than perfect (actually it was pretty thick). I had constant strep throat during the winter months, pink eye almost every change of the season, and frequent bumps, cuts, bruises, and broken limbs due to my incurable curiosity and adventurous attitude.
The summer before my Freshman year of high school, I contracted mononucleosis, making me bed-ridden for 3 months straight. Worst summer vacation ever. At this exact time, my own father had just had his leg amputated from his diabetes that caused an infection in his foot. From that moment on, my dad became terminally ill and didn’t really have the drive that he used to. The man who was once my energetic, fun, and inspirational dad, became depressed and his energy plummeted. I was too unsure of myself then to do anything sensible that may have helped him, and I began to mourn the loss of my dad right then. I became more of a recluse and a little rebellious. I kept my grades high in school, but I didn’t want to be there. In a way, I was a typical teen, but I wanted to grow up fast. During my high school stint, I was determined to become “health conscious”, more environmentally aware–more alive. I went vegan, poured myself into making art, and tried to forget that my dad was dying.
You could say that my favorite person in the world–my dear dad–set an example for me at a young age of how not to eat. I would watch him drive an insulin needle into his stomach each morning and each night, following the shot with a cocktail of pills, all the while not changing a single thing about his highly processed, vegetablely scarce diet. He could no longer walk and slowly every organ in his body was failing. This is a controversial topic in my family (whether bad food and sickness go hand in hand), but I’m not ashamed to speak my mind on the matter: I believe food and health are directly related.
At just 15 years old, I alleviated some of my despair of my dad’s rapidly declining health by focusing on my own health, and that of the animals and the planet. I had loved to cook since I was just a little kid, and decided that making vegan versions of all my favorite foods might help both me and my dad–although he was reluctant to eat most anything that wasn’t a steak, burger, tomatoes or potatoes… or certain types of candy. I was so excited about my new discovery of animal free cooking and tried hard to share it with him, but he simply wasn’t interested. He never caught on to my veganism, proclaiming that my diet was too restrictive and unhealthy. I felt defeated by his dismissal of my soy based Alfredo recipe and egg free spice cookies that I had created. At the time, I was eating well, researching nutrition, exercising, and was probably one of the healthiest people in my nuclear family–but, my parents and siblings thought otherwise. A few times during high school, I gave up veganism, but never for long. I always went back, and re-aligned myself with what made me want to become vegan in the first place–mostly because of what my father had taught me about compassion. I guess you could say I was having a bit of an identity crisis in my early to late teens, and I fully accept that it sometimes takes a while to figure out what sits best with one’s own values. I had the facts about veganism, but I also had many loved ones telling me that it was simply not okay to only eat plants. I grew up in the Midwest and veganism was not something that made any sense to most people there—including my family. I pressed on though, dabbling in and out of veganism throughout my teens and into my twenties.
The same month I graduated highschool, I got into a very abusive relationship. Even though I graduated with a 4.0 GPA, and had my sights set on college and grad school, my outlook was not good. The moment I left highschool, my life was full of things no girl should ever have to deal with. By my sophomore year in college, at 20 years old, I had been afflicted with the daily physical and mental abuse by my “boyfriend”, an eating disorder, an unplanned child and the death of my beloved dad. It was a tough ass time in my life. I plugged away though, continuing to go to college, and eventually became a single mom, enrolling my baby in daycare as I worked full-time and finished up my BFA.
After a year or so of dealing with being on my own, both from the loss of my dad, and as a single parent, things started to look up. I started to earn a lot of praise for my hard work from my college professors, I scored an internship with the local art museum, and I was on a path to earning my MFA in studio art, where my most supportive professors believed I could get into any program I wished. My personal situation was getting better, good even, but my health was getting worse.
When I was in my early twenties, in my last year of college, I contracted meningitis. It was the scariest experience of my life and I am not exaggerating in the least when I say it completely changed me.
As I said, I was single at the time, but I was still looking for the love of my life—I knew he was somewhere out there. I met a very nice guy (a handsome drummer in a metal band with a very long beard and countless tattoos) and we dated for some time. On one of our very last dates we ate our regular noodle house. I ordered Pad Thai (my favorite) and drizzled it heavily with Sriracha (also my favorite… I have many favorites). I will never forget the feeling I had when I left the restaurant. My neck felt heavy and and achy; I thought I maybe had begun to catch the flu. It was February after all, and I hadn’t suffered yet with my usual winter sickness. I drove home where I was greeted by my roommate and a pile of dishes (typical, but hey, no grudges). My roommate wished me goodnight as she had to rise super early for work, and I went off to wash the dishes. It was at this time that I began to feel a headache unlike anything I have ever experienced before. Looking down to do the dishes caused the most excruciating pain in my neck and I began to think something was wrong. I quickly finished up and went straight to bed.
The next morning before class, I had to man my post as a barísta at Barnes and Noble’s cafe. Upon waking up, I noticed my headache had gotten much worse… it was becoming hard to see and very very painful to look down. I got dressed using every ounce of effort I had left in me and drove to work (awesome decision, right?). Luckily my son had stayed the night with my mother, so I didn’t put him in any danger by driving around. By the time I had gotten to work, I must have looked like hell because my boss immediately sent me home. I thought I was experiencing my very first migraine. Not soon after I arrived back home, I noticed that I was losing feeling in my legs, so I lay on my bed and called my mother, unable to support the phone with my own hand. I was terrified. By the time she had arrived my vision was going. Fast.
It only took a couple of hours of waiting in the ER before I went completely blind and my legs felt like they had been set on fire, or at least the parts of my legs I could still feel. I was screaming out loud for help; I couldn’t see anyone, but I could hear people talking in murmurs. After a spinal tap they had determined I had meningitis. I was moved to the Intensive Care Unit and remained there for almost two weeks, unable to see a thing and drugged up beyond belief. By the time I regained my vision, I was not the same person anymore–physically or mentally. Immediately, I had noticed that I had a giant rash on my forehead and my headache was still there, albeit a teensy bit less prominent. As soon as I recovered, or at least, enough to be released with a giant shot of morphine in my butt (which I continued to receive for several weeks), I felt like a switch had been turned on me. I’m not sure what happened, but I called my then boyfriend, invited him to get coffee and broke up with him that day. I chopped off all my long (painstakingly grown out) hair during an art performance piece at school. I fell madly in love with a boy (now my husband), gained and lost friends, and decided that becoming an art teacher and getting an MFA wasn’t what I wanted to pursue, all the while dealing with some very irritating side affects of recovering from meningitis. I graduated from college, kept making art, and set my sights on feeling better. Weekly doctor visits and referrals to specialists became my normal routine. MRIs, CAT scans and multiple blood tests were done over the course of years to try and figure out what was wrong with me.
After five years I was still suffering from the same symptoms I had days after recovering from meningitis. I had trained myself to deal with it day in and day out, constantly searching for answers from my neurologist, my primary care physician, my dermatologist and a few others who came and went over the years. My doctors and those specialists had determined I either had a case of Chronic Meningitis, or was slowly developing Rheumatoid Arthritis. At the time, I didn’t care what diagnosis I was given, I just wanted to feel better. For five years I had suffered daily with excruciating joint pain in my wrists and knees, a terrible rash that took over one third of my face, Dysesthesia of the skin (a randomly located, very painful fiery sensation on the skin caused by a neurological disorder), horrible daily migraines that made me very sensitive to light and noise, sores on the insides of my mouth that never seemed to heal and made it difficult to eat and drink, and pits and grooves all over my fingernails. By the end of my rope, right after I had just started this blog and had my second child, I was at my worst. I had chronic fatigue causing me to nod off at inappropriate times, and my body felt like it was made of lead. My migraines were so bad, I could barely stand to be awake even when I had some energy, and my joints and dysesthesia had gotten so painful that lifting up a pencil and paper was problematic. I honestly believed I was dying. I may have been.
The fortunate thing about that whole mess was that I had plenty of time to peruse blogs, what with my constant lying about on the couch. One of my favorites that I had just discovered was Gena’s blog, Choosing Raw. I’m not sure what made me forget that I truly believed food was thy medicine—perhaps I felt like veganism for me should have been “good enough”—but Gena’s crisp and encouraging writing and sensible advice brought it all back for me. And, a lot of desperation to regain my health gave me the drive I needed to do something different. Days within discovering Gena’s blog, I decided to give “high raw” a try. I honestly couldn’t fathom feeling any worse than I was at the time—and cutting out the baked goods, beer, and buttery spreads seemed like a sensible thing to do. My husband, also troubled by my rapidly declining health, joined me in my effort, to offer support and encouragement.
You guys, I shit you not when I say I was 90% better within a week. After 5 years straight of oftentimes debilitating symptoms, I finally felt fine. Great, in fact! I thought to myself, “this raw food diet is A. MAZE. ING. “ Concurrently, I was seeing a new doctor in the same clinic I had been going to for years, who I was hoping would be the one to finally give me answers. My other doctors just ordered blood tests, found nothing conclusive of what they were looking for, and prescribed me antidepressants and pain pills. After the first few doses, I simply stopped taking them. Once I had been switched to this new doctor, I let her know my concerns, and she immediately agreed to rigorously find some answers. I had just had a ton of blood tests ordered before I started my self-initiated raw adventure, so when I went in for my follow-up appointment, I had some things to share with my doc, and she had some things to share with me. Serendipitously, my doctor had enlisted the help of a Med Student who was specializing in auto-immune disorders. After seeing my bloodwork, he stated that I either had Rheumatoid Arthritis, or Celiac Disease—as my tests came back indicating so.
He looked me sternly in the eye and said, “If you give up gluten for a few weeks, and your symptoms disappear, then we know what our answer is. If they don’t subside, then we’ll further investigate the possibility of RA. Also, we may want to do a biopsy, although those seem to be only partially effective in diagnosing celiac, and we may need to do it twice.” He mentioned that my bout with meningitis was probably what triggered it.
Although, hearing this was a shock to my system, I quickly rebutted with, “You know, I’ve just realized I’ve been gluten-free unknowingly—I think—for the past 20 days or so. I’ve been eating a mostly raw diet of only fruits, vegetables, seeds and nuts, and the only slip ups I’ve had were red wine, hummus and chocolate. Funny thing is, most of my symptoms have completely disappeared. It’s really incredible. ” The Med Student smiled. He knew he had cracked the case.
My doctor looked dismayed, “Well, I have good news and bad news”, she said. “It looks like gluten might be the culprit here, and the bloodwork also supports this, but in order verify, you would have to have a biopsy… which would require you to ingest gluten again for at least 30 days straight–which I’m guessing you don’t want to do. And, there’s still a small chance that the results could be a false negative even if we go through with this.”
I opted out of the biopsy and we agreed to just monitor my health for the next few months. I went home armed only with a pamphlet about celiac disease and a very confused outlook on my new life—my doctor admitted she personally knew very little about the disease and suggest I Google it. Consider it done, doc.
I called my husband; I was crying. I thought my dreams of becoming a vegan cookbook author had died that day. He was thrilled, though. After 5 years of watching me suffer, and over time get worse, the potential to have an answer to my health riddles was a blessing for everyone involved. I personally was devastated, as I had just begun manifest:vegan and gluten was my life. I loved seitan, I loved bread, I loved beer. And I adored, beyond all those things, baking. I wrote a post about having to transition back in 2009, here. But, I don’t think it quite touches on my actual experience with discovering my gluten issue. I’m happy to report that since that one doctor visit, I have only returned a couple more times just to reassure her that everything was back to normal. And I am still okay, aside from some random bouts of dysesthesia when I get stressed, and the darned rash that still marks my forehead.
Today, my diet is admittedly quite different than it was several years ago. Obviously, I’ve cut out all gluten, and my body is so pleased with the change that even minute amounts of the stuff (cross contamination especially) will make my stomach bloat out and a migraine flair up. It’s puts me out for days. I’ve also retained that love for raw foods that I was introduced to a few years back. I’d say I eat a daily intake of 80% raw fruits, veggies, nuts and seeds, and 20% cooked foods, usually in the form of baked goods, cooked onions pasta and some form of chickpeas. And I feel fantastic.
I have been blessed with not so great health, but I work with what I’ve got. And, I feel as good today as I did when I was a kid. I’m full of energy again, my mind is clear, and best of all, I don’t dread waking up each day, unable to spend time with the ones I love due to pain or sleepiness.
Now, to the question that may be on everyone’s mind… Do I think that everyone should give up gluten?
No, I don’t. In fact, I envy those of you who can enjoy your vegan pizza delivery, seitan cheesetakes, fresh vegan donuts, and craft beer. But, do think that some of us have an intolerance to the stuff and we may not know it? Definitely. Especially if your experience is at all like mine. There is a significant number of people out there who are suffering from either celiac disease or another type of gluten intolerance and aren’t aware of it. For those of us who have been plagued with pain or other ailments with no real reason as to why, I think giving up gluten (totally, completely, 100% gluten-free) for a while is worth a a shot. And if it doesn’t help, then you’ll know that gluten isn’t a culprit. I’m certainly no nutrition or medical expert, so heed my advice with caution and please consult your physician when considering a dietary change. But, over the years I’ve met many who do have stories like mine. And, maybe some of you can relate as well. That’s why still I blog my [now gluten-free] recipes and write gluten-free vegan cookbooks–so that others, who also need to or choose to give up gluten and don’t know where to start, can find some solace in my “normal looking” recipes. Although I started blogging to help bring awareness to veganism, I continue to blog to help others who may be in the same boat as me. Since veganism is very much a part of my beliefs, and I’m forced to be gluten-free, I know that it’s often hard to find good recipes that tackle both. So, I’m trying to help as best I can.
Thanks so much to all of you, bloggers, readers, and anyone else who has come into my life during this interesting journey. I hope that you find my story insightful, and for those of you who ask “why vegan and gluten-free?”, I hope this helps explain it.
For those of you who are gluten-free… did you experience anything similar to what I did, or is there another reason altogether you avoid gluten?
What do you non-gluten-free folks think of the rise in “gluten-free” labeling and products now available? I’d love to hear your thoughts. With all the talk about gluten-free in the mainstream these days, I find it fascinating to see how we all got here.