Kent's Vegan Allergy Beacon Page

Hi, and thanks for visiting my page on the topic of a very rare, almost-unheard of food allergy condition that I suffer from. I call this a "beacon page", because I'm hoping others who suffer from conditions similar if not identical to mine, can and will find it while surfing the Net, and will contact me , so that we can share information and commiseration and build up a Web resource page for others who are similarly afflicted, and thanks! ~~~Kent

My Bio. Concerning My Vegan Allergy Condition

When I was a year old or so (12-14 months old), my father took his pocketknife and sliced a sliver off an apple he was eating and placed it in my mouth. As soon as the piece of raw apple hit my tongue, I immediately went into severe anaphylactic shock, swelling up to nearly twice my normal size, my lungs quickly filling with fluid as my body reacted to the perceived "poison" I had in my mouth. We lived in what was then a rural area between the towns of Cary and Raleigh, N.C., several miles from the nearest hospital which was Rex in downtown Raleigh, so my father bundled me up and rushed me to Rex, where he burst through the emergency room doors carrying me (a memory I have to this day), the doctors quickly pumping me full of epinephrine and other drugs to counter the full-blown late-stage anaphylaxis I was in. As I continued to turn blue from drowning in my own fluid that was still filling my lungs, the drugs finally kicked in, and with other work done by Rex's doctors, I was saved. The doctors later told my parents that if they had been just five minutes or less slower getting me to the hospital, I would have died.

The next several months were spent taking me to different specialists, trying to figure out the anaphylactic "trigger". No, I wasn't stung by an insect, no, it wasn't a reaction to aftershave or perfume at the house or on my parents, no, it wasn't a reaction to anything on the apple. After many, many months, and more tests than my parents could remember, a biopsy on my tongue revealed the presence of some "taste" receptors like had never been observed before (apparently) in recorded medical history.

The Diagnosis & Prognosis

The way it was explained to my parents, and later to me when I was old enough to understand it, is that on the human tongue there are nerve receptors of certain shapes and sizes that fit certain molecule shapes and sizes. One shape and size when "bridged" by a certain molecule shape and size creates a synaptic link which then triggers a response in our brain which we interpret as one of the five basic flavors.

The nerve receptor on our tongue which creates the taste of bitter serves a vital function. In the dawn of pre-civilization, when our ancestors would forage for almost anything edible, if something in the wild tasted bitter, they would instinctively spit it out, because bitter taste often (but not always) indicated something poisonous to eat.

In my case, I have a set of special receptors on my tongue much like those that create the taste of bitter, but of slightly larger and different depth and shape, which fit certain large-block vegetable proteans. When something green, almost anything (but not necessarily all types of said) chlorophyl-based hits my tongue, I go into immediate anaphylactic shock. But the interior of an apple doesn't have green chlorophyl, does it? And certain legumes, green peas, beans, etc., which I can eat if they're cooked to death until the large-block vegetable proteans are broken down, do contain chlorophyl and I can and do eat them.

That's why the team of physicians at Duke University Medical Center, who finally came up with the correct diagnosis of my condition after biopsying my tongue, were so puzzled at first. Certain chlorophyls I can tolerate if they're broken down, and certain other large-block vegetable proteans I can also hack if they're broken down by cooking or other processes, but certain ones, like those in fresh fruits and most cooked ones, and in certain vegetables like celery and other non-root vegetables, are virtually assured death for me if I eat them.

Bespeaks On How I Live Day-To-Day

One of the main questions I get when I initially tell people about this condition (you can imagine how much of a pain it is, let alone how much of on-going embarrassment this is, when going out to eat at restaurants, etc.), is: "well, how do you know what is poisonous to you, or not?" What God has burdened me with, He also has given me a tool to work around it 99.99999% of the time: my nose. I don't have a truly heightened sense of smell like a dog, but when eating anything, I instinctively smell anything before placing in it my mouth, and if there's anything in the utensil of food I'm allergic to, my nose lets me know, often even before placing it close to olfactory early-warning system. If I didn't have this compensatory safety mechanism, I'm sure I'd be dead by now.

If something I'm allergic to is in the food but isn't picked up by nose and somehow manages to get swallowed before hitting those large-block vegetable protean receptors on my tongue, then normally I'm okay, though sometimes I will have a blow-out diahreal reaction, though not always, but that never turns into anything life-threatening.

The next question I'm always asked is: "well, if you can't eat fresh fruits and vegetables, how do you get proper nutrition, how do you assure yourself you're getting enough of the correct vitamins and minerals?" Well, again God taking away but also giving, made my body a little different to compensate for it. I don't need the same RDA's for most vitamins and minerals that most people do, though I do try to intake enough C and B vitamins. Basically, I "listen" to my body, after 40-some years of living with this and other conditions I've become a very good listener when it speaks, and if it tells me I need a certain vitamin or mineral supplement at that moment, I take it.

And the third question is almost always: "if you can't eat most fresh fruits and vegetables, then what exactly can you eat?" That's a good question, and a perfect segue into my next bit. Below is a short, incomplete list of certain foods I can and can't eat. I'm including this to help others find any common identity that they may or may not have with my condition, so that together we may build a resource center on the Web for others like ourselves.

Foods I Can Eat

Foods I Can Not Eat

*Meat of any kind.
*Bread products.
*Almost any root crop, i.e., potatoes.
*Heavily-processed tomato products, such as ketchup, tomato sauce.
*Orange juice from concentrate (that's been catalycised by high heat).
*Certain spices such as paprika, onion salt, garlic salt, and allspice.
*Most legumes like field peas, lima beans, and peanuts and peanut products.
*Corn
*Carrots, if they're heavily, heavily cooked until they're falling apart.
*Honey
*Most forms of sugar
*Salt

*Fresh fruit of any kind, i.e., apples, pears, peaches, etc.
*Celery
*Any leafy-green vegetables like cabbage, collards, turnip greens, and kohlrabi.
*Cattail root or root flour.
*Fresh tomato, or any partially processed tomato product, like stewed tomatoes, tomato puree, and tomato sauce with whole tomato chunks.
*Certain spices, such as cumin, celery seed, cinnamon, MSG, nutmeg, sage, bay leaves, and oregano.
*Raw carrots.
*Fresh-squeezed orange or lemon juice.
*Acorn flour.
*Most green herbs, either fresh or dried, such as parsley, sage, rosemary, and yes, thyme.

In Closing

I would love to fill the rest of this page with a bibliography of hard-copy books and articles about this or similar conditions, a list of organizations which could help someone with a condition like the one described above, and a massively-long list of links to other resources on the Web which could offer support and advice to those afflicted with this very real but very rare condition, but . . .

. . . but I don't have any of the above, because in a lifetime of looking, I haven't found any that are worth anything. Let me repeat my heart-felt expression of seeking community with others who share an identical or similar food allergy affliction to mine to please email me so that we might begin building an online resource center, either here at this page or elsewhere, and thanks once again, Smile! ~~~ Kent

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