Elimination

Hi Owl,

After an exciting weekend of adjusting to all of the things I can't eat and fiercely cuddling my cats in defiance of the doctors' orders, I'm back home.

For those of you who might be unaware, I've been pretty sick for awhile, and we've been working hard to try and figure out what's up. It's nothing life-threatening or anything, just unpleasant, and often hard to work around. I'm planning another, more in-depth post on living with my Mystery Illness, so I'll save that for later, but right now, I wanted to talk about diets.

I like food. I like cooking it, I like eating it, I like talking about it. But in recent years, my ability to enjoy most food has been diminished a fair amount due to loss of appetite, and the fact that most food seems to make me ill. Even so, I still like cooking and eating and talking about food, even if it's been a bit more difficult.

However, in the course of my quest for a diagnosis, I have tried several diets, in the event that there is an underlying food sensitivity that is making me ill. These experimental diets, while they have yet to cure me, have been enlightening in other ways.

In autumn of 2013, I tried a gluten-free diet, even though I had tested negative for Celiac Disease. I was a year out of college, working at a historical society in Pennsylvania, and I was sicker than I had ever been in my life. I went to see a doctor out there, who suggested that I try removing gluten from my diet for a trial period, to see if it helped. This happened at the same time that I was dogsitting for a friend of a friend, so I had a fancy kitchen at my disposal, and some high-end grocery stores nearby that catered to more eclectic eating habits. It wasn't overly-hard to find gluten-free foods, but they were generally a) incredibly expensive and b) very poor substitutes for the real thing. Seriously, I don't know if you have ever tried gluten-free bread, but it is not good. Gluten-free peanut butter is worse. So, despite the nice kitchen and the well-stocked grocery stores, making food that was both edible and enjoyable at a reasonable price was challenging. Even worse was going out to eat. This had become a major component of our work culture. I was working with four of my college classmates on an archiving project, and we generally took our lunch breaks together at one of the local restaurants, to talk about the project or simply to decompress. Even more importantly, the professor who was overseeing the project flew in from our alma mater in Wisconsin every other week and we would discuss our progress and our plans for the next weeks over a several-hours-long dinner at a Chinese/Japanese buffet. Suddenly, I couldn't eat gluten, and my restaurant choices were drastically limited. I stopped eating lunch with my co-workers, opting instead either to bring my perpetually-undercooked and inexplicably dry brown rice pasta from home or eat at one of the two restaurants that had blissfully thought to add gluten-free items to their menu. The bi-weekly buffets were harder, since even sushi was out---the rice vinegar used in making sushi rice generally contains gluten. I started to eat before these meals, and while my colleagues ate I would nibble on a few pieces of sashimi and sip my water while we discussed. This was not a set-up ideally suited to these two-to-four hour long chats, and though my colleagues and professor were supportive, I got the sense that my not eating made them somewhat uncomfortable.

In fact, I saw this a lot. Gluten-free diets have gained popularity as a health fad, even among people who aren't gluten-intolerant. Added to that, so many of the people who think that they are gluten-intolerant really aren't, as was (spoilers) the case with me. The result of this is that many people don't look kindly on gluten-free diets. When I asked what was in a dish or refused cookies because of the flour, people assumed I was just being picky, or rude, or overly-sensitive. I knew I didn't need to explain myself to these strangers, but it still bothered me. Not only was I sick, not only was I not able to partake in the food culture we had developed at work, but now I was being belittled by strangers for trying to make myself healthy. I was astonished by how many people felt the need to make my diet their business, and that, even more than the expense, the poor choice in quality food, and the difficulty fitting it into my workday, was what stood out to me most about the experience.

I quit the gluten-free diet before too long when it became clear that it wasn't helping. Flash forward about ten months to July of 2014. I was still sick, and we had exhausted a good number of other routes that had seemed likely. My mom and I decided that it was time to take a fairly drastic measure---an intense, comprehensive, and daunting elimination diet.

In brief, an elimination diet is where several foods or food groups are removed entirely, you take careful notes of what you eat and how you feel, then slowly reintroduced after a period of time (generally 1-2 months). Ideally, one of the foods or groups of foods will make react negatively when reintroduced, thus pinpointing what is making you sick. Simple enough.

This elimination diet, however, wasn't just one or two foods. We eliminated all gluten (easy, done that), all dairy, all processed foods, all legumes, most meats, barring fresh water fish, lamb, and turkey, all nightshades (potatoes, peppers, eggplant, and tomatoes are the big ones here), and various other eclectic items. And yes, I do mean we---Owl immediately offered to do this with me, and she was amazing throughout the entire thing. This list sounded tricky on the surface, but we soon realized that it was a LOT trickier than we had anticipated. We couldn't have corn, and that meant nothing with high fructose corn syrup, either. We couldn't have most grains. We could have olive oil, but only cold, expeller-pressed olive oil. We couldn't have sugar. We couldn't have soy. Most spices were out. Take a look around your kitchen. How many items in your pantry have none of those ingredients in them?  A few, I'm sure, but not a ton. Owl and I made a trip to a local grocery store with a large organic section, and after several hours and a truly astonishing amount of money, we had enough to restock our pantry with the staples---arrowroot flour, agave nectar, safflower oil, almond milk, brown rice pasta, etc. My parents were incredible, helping us both with the exorbitant costs of maintaining this diet, and with coming up with creative new ways to prepare exciting meals---or at least less bland meals. Not to mention, they were a great source of moral support, which was much needed, as it wasn't long before I realized that this diet, far from helping, was making me sicker. I was doing everything I could to get all the nutrients I needed. We would cook huge dishes of salmon or tilapia so that we could refrigerate leftovers to grab at a moment's notice. Avocados became our new best friend, since they contained both protein and a good number of the nutrients we needed. I started carrying around bags of cashews and almonds, and learned to make sweet potato and kale chips that were actually quite good. We ate at one restaurant the entire time we were on this diet, and it was for my birthday. My parents came up to visit and took us to a local landmark, and we ate at the restaurant there. Nothing on their menu was allowable on our diet, but the waiter was incredibly patient and brought all of our restricted foods to the chef, who made us an amazing dish of fish (some sort of white, cold-water fish I'm forgetting at the moment) lightly seasoned with vinegar and salt.

In many ways it was an enjoyable, or at least interesting, experience, because we were paying such careful attention to what we ate, and we were cooking a LOT more. It made us more mindful of what we consumed, how we shopped, and how we cooked. It was definitely eye-opening to realize just how many additives go into most food. And not just the stuff you'd expect it to be in---juice, peanut butter, bread (even when we found gluten-free bread, it was loaded with chemicals and additives we couldn't eat). Organic food is far from free of these additives---turns out, soy is organic, but soy lecithin is also an additive. In fact, soy is ubiquitous these days. Finding food that doesn't use soybean oil or soy lecithin as an emulsifier is nearly impossible, it seems. And if it doesn't have soy, it has high fructose corn syrup. So, challenge though it was, we definitely got an education. And having a reason to make time every day to cook was nice. It was also, I think, kind of fun for Owl and I to do something so challenging together, though she may not agree.

In the end, however, I was so sick that we realized that reintroducing the foods back in to see what I reacted to would be useless---even if they made me ill, we wouldn't realize, since I was already feeling so badly. I was constantly sick to my stomach, I was listless and could barely make it up a flight of stairs, and I had been advised against going to the gym. I was constantly hungry even though I also felt sick, I was tired all the time, and, to be perfectly honest, I was not much fun to be around. It was a frustrating experience, and I was annoyed that I was going through all of this hassle and feeling so poorly as a result, when it was supposed to make me better.

We stopped the diet four weeks into the six, and I started to feel better---or at least, my "normal" level of better, which wasn't that great.

Now, in February of 2015, I've had the worse month health-wise that I can recall having. On Friday, I had an allergy test, which you can read about here, and as it turns out I'm sensitive to quite a bit. I've been put on another elimination diet. This time it is much smaller, which is a blessing, though there are still a few limiting factors on there---soy, again, has proven to be the trickiest, with barley flour, almonds, and olives as close runners-up. Rice, rye, apples, pineapples, halibut, shrimp, tuna, lamb, turkey, cabbage, and sweet potatoes are also banned. In six weeks, I can begin to reintroduce these into my diet, but until then, we'll have to get a bit creative. We just went on another (shorter and less insanely pricey) grocery run today, finding bread without barley flour and flour tortillas without soybean oil, replenishing our supply of non-olive-based vegetable oils, searching desperately for fruit juice without apple concentrate, and splurging a little on organic, 70% cacao chocolate, because everything else has soy lecithin in it. In comparison to the last diet, this should be much easier, especially now that we know what we're doing. (And yes, Owl has agreed once again to join me in this adventure.) We'll post more about what we've been cooking, and what weird things we've been finding out aren't allowed because of soy- or malt barely-inclusions.

So far I think the most surprising revelation has been how much food, even healthy food, has unexpected ingredients. Apple concentrate or apple cider vinegar are in a surprising number of sauces, dressings, and juices, malt barley flour is in whole wheat bread and most crackers, and soy? Man, soy is EVERYWHERE.

I have so much more to say on this subject, but I think I have rambled on enough for one night. So, friends, I will leave you with this challenge, if you're interested: try and go a day and eat only foods whose ingredients you know completely. Sure, you know all the fixings on that sandwich, but what went into the bread? Did you know a number of teabags use soy lecithin? And that organic juice may have some surprising additions. These aren't necessarily bad things, but neither is eating mindfully, at least for a day. Try it, and feel free to comment if you do and let us know how it went!

Owl, thanks for helping me with this diet, and I'll see you tomorrow.