The Food Situation
I’ve always been a picky eater. Onions in particular have historically made me feel like I’ve been poisoned. My mom is traumatized by the time I shrieked upon tasting onions in my food at the neighborhood Taco Bell when I was 3 or 4 years old. She recounts the story nearly every time we drive by the building, a building that has been many other restaurants since it was a Taco Bell. She wonders if they’ll let me back in (Answer: Yes, they gladly accepted my business all throughout high school and I have the collection of upside-down food wrapper stickers that read “NOINO ON” to prove as much, but this doesn’t hinder my mom's flashbacks). Tastes, textures and food smells are by definition more intense to those of us with higher sensitivity, but what is notable to me now is how early on I felt assaulted by the consumption of certain foods.
The food trauma story I've told countless times: When I was 10 we bought 6 baby chicks from a pet store. Three were mine, three were my little sister’s and they lived in a box with a heat lamp near the family room until they were old enough to survive the chilly Bay Area nights out in the playhouse-turned-chicken-coop of our suburban backyard. We adored them and they quickly became well-socialized little family members. One in particular, Alice, a Rhode Island Red, would follow me around the yard, hopping into my lap for snuggles and body heat exchange whenever the opportunity presented itself. Though we had been assured that they had been “sexed” female before acquiring them, as they progressed through the awkward teenage phase it became loudly clear that two of these chickens were, at least outwardly, Roosters. “Alice”—>“Alister.” Due to zoning, we had to return two of our pets to the store (I think we got a refund and everything). Carolyn and I were so brave about this. We transported our friends in cardboard cat carriers back to the pet store. As the story goes, I asked the clerk how we could make a note of their names and he told me it wasn’t necessary, that they were being taken to a butcher. Horrified, I didn’t eat meat again for nearly 25 years.
So I’ve got this long history of struggle with what I eat. Even as a baby I was “too skinny” and no matter how much I consume I always wake up starving. Breakfast has never been optional. I’m not a dainty eater though, when there is even tolerable food available I shovel it in. Generally not food of the highest quality or nutritional value, but I got by…until I didn’t.
During my prolonged chronic illness I received many diagnoses. Often dietary restrictions were suggested as alternatives to the western medicine my body wouldn’t tolerate. When I went gluten-free I felt a bit of relief, notably my migraines became much less frequent, which was exciting but also revealed that there were more substances that my body wasn’t handling well. Losing gluten from my life was a first taste of how anti-social food restrictions can be. A weekly tradition with some of my friends from high school at a local beer garden was disbanded, as I had been the main instigator and could no longer partake. I've hardly seen most of those friends since. The gluten free diet was popular to mock for some reason and, unlike with vegetarianism, I often felt shamed when eating publicly.
Next I eliminated dairy and processed sugar, the most difficult eliminations I did. I’ve heard each of these triggers a similar part of the brain as opioids, which seems an extreme and insensitive comparison, but I suppose on some level, yes, I’ve always been better at deprivation than my sister. There is no doubt we would have scored differently on the marshmallow test. But obviously the comparison is ridiculous.
When a Rheumatoid Arthritis diagnosis was made, the Auto-Immune Paleo Diet was more helpful than any of the drugs they tried. It added legumes, seeds, nightshades and grains to my elimination list. But most painfully, it required I also add in meat to my diet. I wrestled with this emotionally for months, I sobbed through meals, I still have trouble with it. Who am I to take someone else’s life? I take solace in that we now have more access to humane sources of meat, but I do hope to eat less of it as soon as possible. On top of this emotional pain, the AIP diet isolated me entirely from eating socially. It made it impossible to share meals even with my husband, as what I could eat was not enjoyable for him, and let’s be honest, generally was not enjoyable. It was close to impossible to stick to the diet at restaurants. When I did make the effort for special occasions, it was exhausting and left me wondering if it was worth my precious energy. Food had to be made from scratch, for every meal. A huge lifestyle change for me. It was a catch 22, I needed this diet to help me with my pain and fatigue, yet following the diet required a certain amount of health in order to keep up with the demands. Lots of people feel better on these diets because they instantly lose weight. I did not have weight to lose and it got pretty scary at times. I found myself regularly and involuntarily laying on the floor of the kitchen to rest between tasks. I invested in some seriously comfortable mats to stand on during the long hours. They turned out to also be excellent for resting my aching torso. And yet, still, it was clear I was consuming foods that didn’t agree with me. On the AIP diet you are supposed to be able to begin reintroducing foods after you start feeing better, a month or two in. I never felt well enough to do so. I tried here and there for almost a year but it was impossible to sort out what my body was reacting to.
When Small Intestinal Bacterial Overgrowth (SIBO) was diagnosed (oh, maybe 20 years after the symptoms showed up?), I found a variation on AIP for that. It further removed FODMAPS. They’re a bunch of different types of sugars that tend to ferment in the gut. At this point it became easier to identify what I could have rather than what I couldn’t have. It was a frighteningly short list.
This diet change happened the week my sister died from long term drug abuse, originating from an opioid addiction. I barely remember how I survived this time --I was completely overcome with grief and my body wanted very much to give up entirely-- except I recall with clarity, and with more gratitude than I can ever hope to express, the friends who took turns coming by to help batch-cook celeriac fries, blanch collard green wraps and source elusive green plantains.
Now his only child, my dad helped me find and fund a personal chef who has been my lifeline. Pesha specializes in cooking for people with dietary restrictions. She sees how important it is that one enjoys eating the food in order to see the benefits of the nutrition. She has also touted the importance of eating socially, something I have yet to master. She began cooking a week's worth of meals for me every Wednesday. I began to live parts of my life outside of the kitchen. I have rarely laid down on a kitchen floor since.
And then somehow the already impossibly short list got even shorter. I was still having IBS symptoms. Due to family history I got cleared (ahem, in more ways than one) by a colonoscopy and then shortly after was introduced to allergy acupressure treatments, basically NAET but without needles.
What is NAET? It’s bonkers. Totally woo woo. And has been completely, incredibly helpful. I don’t fully understand it, no matter how many questions I ask. I don’t really care at this point. I’m just so pleased that something helps. Here’s my experience of the allergy acupressure version of the treatment: A practitioner exposes you to the vibration of a substance (either the actual substance safely housed in a glass vial or, as in my experience, via an electronic simulation sent to an arm band by a computer database (which, already, wwwwhhhhhuuuutttt?)) and performs a muscle test on your wrist. There is a muscle weakness if the patient is “reactive” to the substance. “Press down,” she says, and oddly, sometimes I cannot. The practitioner performs a series of these tests to identify which substance the body is in most need of treating. Treatment consists of exposure to the vibration of the substance while a series of soothing acupressure pulses are performed on points along the spine. My limited understanding is that it re-trains your body to not “react” to the substance as an intruder that needs fighting off. The body learns it doesn’t need to have the inflammatory allergy response. It’s exposure therapy on a cellular level, soothing the anxiety response to substances rather than experiences. It feels like a universal vital truth I need to incorporate into all parts of my life in order to fully heal: “RELAX!!!!!” (as was prophetically and primally screamed into my face on a retreat by a man in response to my asking if this seat was taken (it had the opposite effect at the time, if you were wondering, but the overall message stuck with me))
The introductory AAS session found that, indeed, I was still “reacting” to foods and a host of other substances, even some of my own hormones, digestive enzymes and neurotransmitters (whut). They prepare you ahead of time that you may not see results until they clear away a bunch of the underlying issues, for the average person about 3 sessions. It took me about 8, over the course of which they identified which of the foods I was still consuming that needed to be avoided. Painfully, we restricted the diet further (I say “we” because it is a team effort now).
And my gut finally started feeling well enough to reintroduce foods! I can almost always tell when I ingest something that bothers me because we finally got it down to the very few things that weren’t “reactive.” At the lowest point my spreadsheet of “Safe Foods” (a google doc shared with anyone who braves trying to feed me) was down to 75 entries and we’ve slowly climbed to 135 over the course of almost a year and a half. Not nearly enough to eat in most restaurants, but some!
Reintroductions are painfully slow, by the way. I keep hoping I can just start eating the foods that now come up as “non-reactive” in treatments, but, hah! No. The standard method works best: 1) Eat a teeny tiny smidge of the substance, preferably cooked, with a meal. 2) Eat a small bite with the next meal. 3) A big bite at the next meal. 4) A small portion with a meal. 5) A large portion with meal. 6) Stop eating it and see how you feel for the next couple days. If all goes well, hooray! You can eat this substance with regularity. If not, don’t, and be mindful that it could have disrupted your gut biome and that needs to be in check before trying to add anything else new.
I’m still having trouble gaining back weight, despite the success in food reintroductions. Stress is definitely playing a role and I watch my weight fluctuate accordingly and immediately in response to it. It seems my body can’t absorb nutrition properly when it feels unsettled. I’m not sure if it will help or make it worse, but I’m planning an epic trip in an attempt to make up for all the time I lost to chronic illness. Surely a trip spent mostly in kitchens, but kitchens in other countries.