Food Challenge Day
One of the events in the lives of people with food allergies who choose NOT to live with those allergies for their rest of their lives is occasional food tests or trials.
This is part and parcel of the desensitization process and is frankly as scary as f^ck.
Since my last day n the hospital in January of last year I have tested 14 foods using conventional blood work, which adds a margin of safety, but I have also blind challenged 9 foods.
This process involves several steps.
First some important facts – as a general rule, a severe allergy will manifest somewhere between instantly and 15 minutes after exposure. This is why a good doctor will make you sit for 15 minutes after a vaccination.
severe reactions have been recorded up to 24 hours after contact…and as my body is so very hypersensitive I have not been allowed to eat even “safe” foods alone for over a year and a half now.
I’ll repeat that. If I want to eat, someone has to watch. Period.
every once and awhile we try to expand my diet a bit.
As of yesterday, I had 22 safe foods – no sauces, beverages, herbs, or condiments. Mostly fish, some poultry, a few vegetables, a few fruits, and some nuts. (I’ve published the list before, I think.)
And as of yesterday, my histamine count and inflammation levels were at a new low.
So what does my allergist suggest?
You guessed it.
Now for those of you who have never had an anaphylactic reaction let me describe it for you.
Your tongue swells, your mouth lining swells, your throat swells, and it all swells closed. This equals ZERO air, and all of a sudden you are suffocating. You also feel flushed, dizzy, frightened, get an adrenaline dump as your body panics (cause, hello, you are not breathing!), you might also break out in a rash and huge hives – have learned that not everyone gets the skin stuff – and then you feel nauseous and turn blue and fall down and eventually die.
To avoid the dying bit, you ram a large needle into the side of your leg and the chemical in the needle cause your whole body to react by expanding blood vessels, speeding up your heart rate, making you sweat and thus flushing the toxins from your body.
If like me, you are allergic to Benedryl, the needle is your only option…and some doctors say that Benedryl merely slows down the whole dying thing rather than stopping it anyway.
You could have a heart attack in there if the stuff in the needle takes you just the wrong way or you use too much, you just suffocate to death if the meds are too old or you use too little.
And afterwards your throat hurts, your tongue hurts, your muscles hurt, your heart keeps racing, you are sticky, sweaty, cold, and irritable and you wonder if living was worth it.
The result is that you develop a fine and holy terror of the reaction, a slightly smaller terror of the needles you carry around, and a slightly smaller fear of any and every new food.
PTSD cases have been reported along with food allergies. So have food phobias, anorexia, and weight issues.
And I am high functioning autistic and high strung as it is.
So for me a challenge day, starts with a panic attack.
This is bad as fear increases your chances of a reaction.
I usually then have to meditate, take a hot bath, pray, or try to nap while the challenge food is prepared.
Then I prepare for the test.
I put my epipen, uncased on the table, I put my hydrocort tablets next to it*, I put several bottles of iced or even partially frozen water next to that.
I’ve found extremely cold water can slow swelling and give me extra time to grab the epipen if I need it.
I get my timer and my safe plate and my safe fork.
I put down a handful of napkins.
Then I put a teaspoon of the substance on the plate.
Next I go get my partner. For challenge testing we do increments…of both contact and of time.
We use the steps designed by special forces survivalist trainers (yes, we know one) to test unknown substances for edibility. A soldier in the field is testing for poisons, we are testing for reactivity but the steps still work. We have even shared them with our allergist to her delight and the delight of her patients.
First the food goes in my hand. Skin reactions are mild as a rule and can warn of greater dangers. We check for redness, hives, or swelling in that hand and then in that arm.
We ruled out cabbage for me in this fashion. My hand swelled like a balloon!
Then we put the food on the inside of the wrist on the blood vessels there. Again we check for redness, swelling, hives, etc.
Then the larger vein at the elbow.
If and only if all that works, the next step is to put a tiny amount of the substance – a nut, a pea, a grain of rice – on the tongue.
Hiving, redness, pimpling, and other swellings of the chin actually indicate food allergies.
HINT: If you only get acne on your chin, it’s not acne. It’s a food related rash and you should get tested.
If the small amount does not harm, no tongue itching, metallic tastes (indicative of allergy), no swelling, no bumps, no itchy throat, or burning lips occur and the chin stays clear, then I move on to the next step.
Which is I swallow a very small amount of the substance.
Then I wait 15 minutes to see what happens.
Sometimes what happens is that I win the Epipen lottery, jab myself and duly report to the ER for follow up treatment.
Sometimes it works.
If it does, I eat the remaining teaspoon…and wait 15 minutes.
If that works, I wait out the remaining hour.
And after that, I drink lots of water, stay relaxed, have another hot bath, read and do hourly check-ins with my partner.
If 24 hours pass with no problems, I get to declare the food “safe” and add it to my rotation.
And Steve and I celebrate.
And tonight we are celebrating.
I just added a new food. White rice, in fact to my menu, and that brings me up to 23 !!!