In 1997 I was diagnosed with celiac disease. Well, sort of. I weighed 89 pounds, had so much trouble carrying my books from my car to the college where I took classes that I had a handicapped placard, and had neurological symptoms from B12 and zinc deficiency (first suspected to be MS, later attributed to my then-vegan diet). My stomach wasn’t right. I was afraid to eat because I never knew what would happen next; all I knew was that there would be a good chance I’d need a restroom. I would go three or four days without eating anything at all. I had been to a good half-dozen gastroenterologists when I thought I had found The One.
I walked in, sat down, and begged her for help. She looked me in the eye and asked if I ate wheat.
Of course I did. I was vegan and lived in a Latino neighborhood; when I ate, I subsisted on bean and rice burritos and little else at the time. Never mind that those beans were likely loaded with lard. I worked on a movie lot, where bagels the size of one’s head are free and ubiquitous; sometimes I’d eat one.
Well, stop it, she told me. She then explained about celiac disease and as she spoke, it hit me: she’s describing me. Exactly.
I immediately stopped eating wheat and I immediately felt a good 50% better, within a matter of days. After years of feeling 100% lousy all the time, 50% was something to celebrate. Problem solved, right?
Well, sort of. My blood test for celiac came back borderline, but the blood test is known to be unreliable. I was scheduled for endoscopy a few weeks later, which the gastro doc and I were both certain would come back positive.
Except it didn’t. It revealed that I had a hiatal hernia, probably a birth defect and a plausible explanation for my lifelong inability to eat large quantities of food at any one time, but my celiac biopsy came back negative.
So she dismissed it as “IBS,” and sent me on my merry way.
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I continued to eat gluten-free though, because I felt SO MUCH BETTER. Whole Foods had just started to open locations in Southern CA and gluten-free food was easy to find. I bought it all – gluten-free cookies, gluten-free bread, gluten-free chips, gluten-free pasta. I started gaining weight and my medical team though this was EXCELLENT NEWS. Soon I was 135 pounds – more than I had ever weighed in my life – and starting to feel not so great again. I was sent to a nutritionist, who said that my grain-heavy, gluten-free, low-fat vegan diet was practically TEXTBOOK PERFECT except for one thing: calcium. She gave me a huge scare about osteoporosis (“especially with your small build”) and encouraged me to add low-fat dairy. I told her that I had been diagnosed at birth with milk allergy, which had proven, through teenage rebellion and eating pizza to be like all the other kids, to not be of the deadly variety, but that I thought dairy was gross regardless and couldn’t imagine myself eating it. She told me to eat cheese and yogurt, as the lactose was converted to something else in the manufacturing process. When she learned I was a coffee drinker – black, at the time – she said to put cream or half and half in it, as both were almost pure fat and thus had no lactose.
Her scare tactics worked and I did as I was told. I added cheese to my usual beans-and-rice lunches. I put half and half in my coffee. I continued to feel lousy most of the time, but not quite as lousy as I had felt when I was 89 pounds – my stomach still felt like hell, but I no longer had the neurological symptoms from the vitamin deficiencies. I also had outgrown all of my clothes. Alarmingly quickly, I should add.
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I moved in with a significant other around this time. Seeking out special food for me and normal food for him proved to be a bit of a chore, so I fell off the gluten-free wagon and went back to eating a somewhat-standard American diet. I think there was a part of me that secretly hoped eating gluten again would get my weight back down. I started feeling worse, but ignored it, because (a) I had been told that I was negative for celiac, and I believed it, and (b) I hadn’t really felt all that great off gluten anyway. I still had all the usual abdominal symptoms that had led me to seek medical help in the first place – the vitamin deficiencies were gone, but not much else had changed.
I lost my job. And my health insurance. And continued to get sicker and fatter.