By day I am a thirtysomething software engineer. By night I am many things: swords & sorcery nerd, tabletop gamer, metalhead, smart-ass.
My main “hobby” these days is survival: I have a severe and sensitive allergy to corn, which is not only a food, but is used in food additives, preservatives, disinfectants, lotions, cosmetics, dyes, building materials, and more. I also have a host of other sensitivities, all of which can cause anaphylaxis in the right amounts.
To stay safe, I’ve had to attempt self-education in many areas that I’ve never even had an interest in previously: food science, textiles, polymer science, microbiology, and chemistry, to name just a few.
While I have many interests that have nothing to do with my health, the corn allergy is mostly what I write about, at least in public forums. Close behind would be chronic illness, invisible disabilities, and chemical sensitivity.
The Corn Allergy Girl
“Hey there, this is B. We talked the other day about the source of the citric acid in your products? I wanted to ask you about your–“
“–Oh, the corn allergy girl. Yes, I remember you.”
It’s not that I really WANT the title. I just get it anyway. Might as well embrace it. And I’m most certainly not the only corn allergy girl. In fact, if you have a corn allergy, and likely to be called a “girl” rather than a “dude,” a “lady,” or perhaps something less polite, then you probably already share the title.
An Amateur Scientist
Unlike more well-known allergens such as peanuts and shellfish, corn is not a “top 8” allergen in the United States, and therefore is not required to be labeled in food or personal care products as a source for an ingredient or if the facilities or equipment may be contaminated with traces. To further complicate things, corn is not only a food, but is used in food additives, preservatives, disinfectants, lotions, cosmetics, dyes, building materials, and more. Since corn is cheap, if a product can be made out of any vegetable, it is usually made out of corn.
Most products you can buy from the store, including whole foods like grass-fed meat and organic vegetables, have enough traces of corn to cause a reaction in me, and the only way to find out whether trying a product is safe is to either guinea pig it and hope for the best (not ideal since allergic reactions can be life-threatening) or to contact the supplier/manufacturer ahead of time and ask them detailed questions they aren’t accustomed to answering and don’t always know the answer to.
Given the complex nature of food and supplement manufacturing these days, asking, “Is there any corn in this?” rarely gets a useful or correct answer. People think you are asking if there are whole kernels of corn, or corn starch, and for a very sensitive allergy, that just isn’t a deep enough treatment of the subject.
In order to even know what questions to ask to judge potential safety of a product, I’ve had to attempt self-education in many areas that I’ve never even had an interest in previously: food science, textiles, meat processing, commercial fishing, polymer science, microbiology, and chemistry, to name just a few. Given my total lack of background and limited time to devote to research, my understanding in these areas is imperfect, yet still more in-depth than many. I try to share what I’ve learned and welcome correction when I’ve got it wrong.
Look, Then Leap
Even when I do the due diligence, there is just no way to know for sure whether an item will be safe for me or others. I could have been given an incorrect answer by a customer service rep. I could have failed to ask a crucial question that would elicit some important detail about a manufacturing process that could introduce corn or another contaminant I’m sensitive to. Or I could have an undiscovered sensitivity to the item itself.
So even though I have asked the questions, there are unfortunately no guarantees. At a certain point you have to just cross your fingers, get your your epipen, and give the item a very careful try.
An Unwilling Hippie (Party Like It’s 1899)
Because so many common practices in the food and manufacturing industry introduce contaminants for me, the only foods that are truly safe for me are the ones that I can control everything they come into contact with. I end up having to make by hand things that no one even considers making themselves. For example:
- If I wanted cooking oil, for the longest time I had to render fat from my safe meat to use for that, or just braise everything. (Now I have a safe premade butter thank goodness, although I may lose it someday.)
- If I want to use spices on my food, I need to either grow them myself and or buy them fresh from a farm and either use them right away, or dehydrate or freeze them to use later. I buy literally 100 lbs or more of spray-free peppers annually from the farmers market and dehydrate and grind them into homemade paprika. I smoke some of them first.
- If I want to eat applesauce, I’d better go get some safe apples (while they are in season) and cook them down. Similar with dried fruit- I have to find them spray free, get them while in season, and dehydrate them myself.
- If I want beef jerky, I have to use my custom processed grass-fed beef (because the grocery store stuff will cause me anaphylaxis) and grind it myself (because the grinder introduces contaminates due to the cleaners and lubricants used on the equipment), then spice and dehydrate it.
- If I want to eat pickles, I have to lacto-ferment them myself using my safe salt and safe water, since the packaged version will have vinegar from corn, or at the very least will use water that is unsafe for me and salt that I would not be able to drink or eat since most of those are unsafe for me.
- I have to get my safe nuts spray free direct from farm (and completely spray-free nuts are actually harder to find than you would think!) and then shell them by hand myself, because the shelling machinery introduces contaminants via cleaners or other items processed on the same equipment.
- And forget about grains, ground flours, or pretty much anything that has to be processed even enough to thresh, clean, or sort. I haven’t yet found one of these that I tolerate.
I already had some homesteading tendencies before, but it was mostly in the vein of general kitchen-witchery: home-baked bread, high quality spices, home ferments, small knitting projects, handmaking cosmetics and soaps occasionally, and candles from melt-and-pour kits. You know, hobbies that could reasonably be researched in a few hours and executed in a day. I never had any particular interest in getting extreme. In fact, I was pretty vehemently opposed to doing that kind of thing on a regular basis. That is why we have such a thing as trade and economy- because people want things that they can’t or don’t want to make themselves.
I also had little interest in going *too* far to sacrifice convenience or thrift for sustainability. I recycled, sure, and even composted when there was someone who took care of the actual compost pile. I got reusable glass containers and used them *most* of the time, though if they were dirty, I did have a backup supply of disposable plastic tupperware. I loved going to the farmers’ market once in a while, but going *every* week? What a pain!
Unfortunately, when you start reacting to just about everything disposable and premade, you are faced with three choices: skip it, get the reusable version if it exists, or make your own. Sometimes, if you are lucky, you can spend a fortune on a premium brand for something that may be safe, but as time goes on and your wallet gets thinner, you start opting to make your own more and more often.
I’ve been doing the daytime-as-a-semi-normie and nighttime-as-a-rock-and-roller lifestyle for a long time. That’s not too difficult, especially because my hobbies are a choice. But it’s a strange juxtaposition of experiences to work as a developer with people who embrace corporate 9-to-5 urban culture and grab-and-go-meals to eat during their commute, then spend your evening-and-weekend social life attending events that mostly take place in bars or large venues that serve food and drink, and then ALSO live like Little House on the Prairie in the rest of your time.
It’s honestly fairly alienating to be discussing weekend plans with your coworkers who are having barbecues and camping trips all summer and you’re like, “Well I’ll be lugging 250 lbs of apples on a hand-truck from the market to my car, and then taking it home to turn into dehydrated fruit, sauce, and flour. (Yes, you can make flour out of apples!)” Or when people ask if you want a drink from the bar and you have to choose between a simple “No thanks,” and explaining that you will probably have at least a minor reaction to any water you drink that isn’t specially filtered through a specific kind of filter, or served in a container that is not made out of the right material or has been washed with unsafe dish soap.
A Personal Apocalypse
When I want to make Little House Life feel a little more badass, I think of this lifestyle as post-apocalyptic. It fits: One day in 2012, all of the infrastructure and conveniences I took for granted– from easily-available foods to safe water to air that was safe to breathe–were ripped away from me. I had to spend years figuring out how to literally survive and had to go without items I couldn’t learn enough about to either make myself or find safe. That kind of sounds like post-apocalyptic living to me, except that everyone around me went on as usual, and only I lived through it.
It’s not a really bad life, but it’s not a secure or convenient one. It’s been really rewarding to get in touch with local farmers and support families who grow food that supports me. I actually love the weekend trips to the farmers markets. I love it so much that I work at them occasionally now. But I don’t love knowing that if I don’t preserve stuff while it’s in season, I can’t eat it for the rest of the year.
When one of my food sources change, I can and do experience food scarcity. If it’s a staple food such as my safe meat, I will almost definitely lose weight. And I definitely don’t love the fact that I spend so many hours per week growing, locating, or prepping food that I haven’t finished a book in a year and almost exclusively listen to music while working or driving.
My activities and ability to travel are also severely limited by my required-but-not-chosen lifestyle. If I want to take a trip on a weekend during the winter or spring, I have to make sure to buy and cook enough food ahead to bring with me on the trip, since I won’t be able to source safe food there and as someone with a more-than-full-time job on top of all my health needs, I really long for the days when I could just grab something from the store.
What it comes down to is that life choices are much easier when they are choices. Investing this much energy becomes a huge burden when it’s something you must do to survive. Overall I’m pretty positive and enjoy a lot of the things I have to do, but it most definitely isn’t an easy life.
Why the Blog
Well, I’ve spent so much time researching this stuff, I might as well share what I know. And honestly, I forget it myself if I don’t write it down. So I brain-dump everything I know here. Also, this life is hard, and one of the things that keeps me going is having a sense of humor about it and helping others by giving them the information that I’ve learned the hard way. That way I feel like at least if I’ve had to suffer, it wasn’t completely useless.
The corn allergy accounts for the most life-altering food and environmental restrictions I have, but I am also allergic to over 30 other foods, dozens of environmental allergens, and hypersensitive to a number of different chemicals. I try to keep the blog focused mostly on the corn allergy, as that is the area in which I am most able to nail down sources. Because I am sensitive to more than corn, I try to only report on contaminated items when I am sure that other corn allergics are reacting to that item. If I am making a guess or a warning based on my experience or on the experiences of others’ who also have multiple sensitivities, I try to make that clear.
Allergy Profile (in brief)
I discovered my corn allergy in 2006, simultaneously with gluten intolerance. I am a probable celiac given my family history and my symptoms, but have never sought a formal diagnosis. In 2012 my already-known corn allergy went from a more “normal” allergy to hypersensitive and extremely severe. I began having throat-closing and facial-swelling reactions to eating small traces of corn-based additives such as citric acid and xanthan gum, and began having severe systemic reactions (blood pressure drop, blurred vision, severe asthma, feeling of throat closing) from being near items such as popscorn or items fried in corn flour.
Within a year of becoming more sensitive to corn, I also began to have moderate to severe reactions to over 30 other foods when ingested (only corn causes severe airborne reactions so far), and now have severe sensitivities to dozens of chemicals. To explain the number of allergies and rapidity of onset, I am also accruing a number of other diagnoses including H-EDS and MCAS. You can read more about those on my more long-winded “Allergy History” page. Most recently I have discovered that my suspected dysautonomia was not that at all, but rather hemolytic anemia due to g6pd deficiency.
At the time of writing I am unable to eat any vegetables in the brassica, chenopod families, can’t eat any root vegetables unless I grow them myself due to allergy issues with the fertilizer, and also haven’t been able to eat any squash that I’ve tried. So that’s most vegetables, basically. But hey, I can eat the hell out of some lettuce, and I have also been having good luck with many fruits.
Due to chemical sensitivities in combination with a sensitivity to cross-contamination in facilities with corn and corn products, I am also unable to eat any food that has ever been processed on equipment, or packaged in any way other than being placed into a box. When I say processed, I don’t mean highly processed, I mean things like threshing dry beans from pods and placing them in a burlap or plastic bag. Or shelling walnuts with a shelling machine rather than by hand.
What it boils down to is that I need to get all of my food fresh and local. Most things that have been pre-cooked, canned, frozen, or transported usually have something *done* to them that cornifies them: spraying, waxing, gassing, glazing, or disinfecting all usually involves something corn-based. Then in addition, the more times something is exposed to a new surface, the more likely it is that one of my other sensitivities will contaminate the time.