Gluten intolerance, part two.

Turned out that having no job and no health insurance was a blessing in disguise. It motivated me to go back to school, first to finish my BA (how many people do you know who took SEVENTEEN years to finish college?!), then grad school. And while I remained uninsured, I had access to the student health center.

In early 2003, nearly breaking the scales at 5’2″ and 172 pounds, I made an appointment. Expecting the usual “IBS” runaround and the offer of meds that only made things worse, I wasn’t very hopeful. But I was desperate and knew that all I had to lose was my time. I told my tale of woe to the student health center doctor, who actually seemed to be listening to me. She told me to keep a food diary for a week and come back to see her. I did, reluctantly, because I expected the usual “Your diet is perfect! It’s low fat! You eat lots of fruit! Keep on doing what you’re doing!” response that had come from every doctor and nutritionist I had seen to date.

I was in for a surprise. “Where’s the protein?” she asked me. I told her I was vegetarian – I ate cheese on occasion and fish once in a while. I avoided eggs because conventional wisdom told us that they are cholesterol bombs. How the heck was I supposed to get protein in my diet?? She cross-examined me further. “And why do you eat so much sugar?” Huh? I ate things like fruit. Granola bars. Stuff that said “healthy whole grains” on the box. I was doing it right, wasn’t I?

Apparently not. “I think you have fructose intolerance,” she told me. Further, she went on to explain that the celiac testing I had had several years before was not done correctly – for the biopsy results to be valid, one had to be eating gluten consistently fro 6 weeks before testing. I had stopped eating it, completely, at least 4 weeks prior to the test.

I broke down in tears – it seemed like everything I had known to be RIGHT was now WRONG. Eating fruit was bad? Eating grains was bad? Eating animals was GOOD? What was I supposed to do?

The doctor told me to focus on protein and fat intake, and eliminate most carbohydrates. I was absolutely CLUELESS – I had no idea what a carbohydrate even was. She told me to read Atkins. I did, and at first I was horrified – I couldn’t do that! Eat bacon, are you kidding me… and not limit quantities? Right, that’ll happen.

But slowly, I was able to figure out some changes that would work for me. I stopped eating gluten again, immediately, and took it a step further to include ALL grains, even rice. No more processed “healthy” granola bars, no more bagels. I started eating eggs, which I had never eaten regularly before, and found they were cheap and easy to cook. I cooked salmon for the first time and LOVED it, once I got over the initial squeamishness of handling it. I limited my fruit intake to blueberries. My stomach suddenly felt MUCH better, so I found this a great motivator to stick with it.

I had a 30-day follow-up at the student health center, where I learned that in 30 days, I had dropped THIRTY pounds, and cut my cholesterol in HALF. I figured this doctor was on to something. Her diagnosis, based on dietary response and medical history, was “gluten intolerance” and “fructose intolerance.” While I would not “officially” be diagnosed as celiac, because I was unwilling to eat gluten again for 6 weeks and repeat the biopsy, avoiding it was simple enough. Avoiding fructose was trickier – it was in EVERYTHING, as all sugar is 50% fructose – but this time around, since I was avoiding all grains, by default I was avoiding all the processed gluten-free crap that I had loaded up on in the past. I thought I was cured, more or less, as long as I maintained a high-protein, sugar-free, grain-free diet. Easy-peasy, right?

But. There was only one problem: salmon is expensive! I was an unemployed grad student. I began, slowly, reluctantly, to try to wrap my head around exploring other protein options. In other words: eating animals.

Gluten intolerance, part one.

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.

~ ~ ~

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.

~ ~ ~

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.