Monday, October 14, 2013

Life with a Corn Allergy: 8 years in.

It's actually been closer to 10 years since I was first diagnosed with a suspected corn allergy.  But I'd say it's been about 8 years since I really learned to live without corn or gluten.  And by live, I really mean LIVE.

At first, it was a huge transition.  HUGE!  I had to learn to cook from scratch.  I had to learn what cooking from scratch meant.

In the past decade, a lot has changed.  But what strikes me most is what has stayed the same.  As a community, those of us with corn allergies are still fighting for knowledge.  The food industry is becoming more polished in their responses, but the responses are still pretty much the same.  Customer service representatives scroll through pre-approved answers and try to use the most relevant ones, when asking about corn derived ingredients I learn about GMO policies, the top 8 allergens (which still do not include corn), the reasons people might avoid certain ingredients (I guess they get a lot of people wondering IF gluten is dangerous, regardless of whether it is in their product), and a variety of explanations about why certain ingredients (like ascorbic acid, a source of vitamin C and an antioxidant) are used.
I still struggle to get a clear picture about whether or not a new product is safe for me, personally, to risk consuming.  And once I do get answers, I still feel like I'm playing russian roulette every time I try something new.  I don't try new things very often.  I don't like gambling with my health.

I have learned how to cook brussel sprouts.  And kale.  I make cookies, cake and pizza dough and the only mix I use is Chebe's.  (Which may be going by the wayside.  My last communication with them was much less satisfying than in the past, and I've heard rumors that the boxed mixes found on store shelves may no longer be entirely corn free.  I'm holding my breath, but trying to get ready for the inevitable.)  I've even made bagels!  (A lot of work, but delicious)

I'm still dealing with professionals who are concerned about my food attitude.  Which is 'if it bites back, don't eat it.'  And whether my unhealthy avoidance of fast food is the root of my daughter's anxiety issues.  On this, I'm wearing very thin.  Most days I argue back that if I'm at fault, it's more likely the years of seeing me sick that's the problem...not the healthy me that simply doesn't eat store bought pizza.  But some days, I want to listen and give up and give in.

I still stumble into conversations about food allergies that hurt.  Ones where my needs are suddenly dismissed because they are simply too daunting for a potluck manager to overcome, or the person I'm talking with doesn't realize that I, myself, suffer from food allergies and makes cutting remarks about snowflakes and crazies or glass bubbles.  But those I manage much better than I used to.  I also stumble into conversations less frequently than I did in the beginning, when the overwhelming task of re-inventing my daily diet and family lifestyle was truly all consuming.

What concerns me most is what's gone downhill.  While I was diagnosed by a medical professional, and originally under the care of a knowledgeable doctor, my health insurance changed and I've subsequently had to change doctors to find ones that would accept my insurance.  I can not seem to find one within my current insurance who is knowledgeable, or even open minded about my allergies.  It's also harder and harder to get medication compounded, even though over the counter varieties consistently seem to make me sicker.

While the corn free commuity that is (and has always been) my life line continues to grow stronger, both in numbers and knowledge, I find an increasing discord among sufferers.  There are those who want corn treated like the other top 8, those who are new to diagnosis, and those who are frustrated from years of half answers and suffering.  There are those who want solutions, and those who want vengeance.  I still maintain that the only solution is to lobby for full disclosure of source ingredients, labeling of GMOs (Which may or may not contribute to the rise in food allergies and other health issues, but are definitely a variable that consumers have the right to control in their diet), and more research.  The cause and mechanics of corn allergy or intolerance or sensitivity remain a mystery, and to my knowledge very little has been done to remedy that.

Corn allergy doesn't consume my life anymore.  But it's still there.  And as it slips farther into the background I find myself caught in many worlds.  I might forget that I have special needs until things come up...emergency day trips, impromptu get togethers, or any sort of health issue including a random reaction to previously safe food.  And then I begin to feel like little more than a victim to this condition.

1 comment:

Evelyn Chua said...

Keep on going! You're doing extremely well. We all are. And no one can say that we are not.