Christine, Horrible Warning

I get more emails than I do comments on the blog, I think the comment blocksmay look too small for what most folks with a corn allergy have to say. Ifyou've gotten tired of telling your partners and friends about how thisallergy is taking over your life, you can always comment here or send and email to cornallergy at gmail (dot) com. It is bit of a relief to talk tosomeone that already gets it, for me too. It may take me a few days to respond, the one thing I can guarantee is that you have both my sympathy and my empathy. It's okay to vent or whine a bit, we all do it and I've said more than my fare share of "How the [string of creative expletives deleted]
did they get corn in that!"

I've been having a really interesting conversation with SushiQ (yes, you canchoose your own blog name) who was just diagnosed a few months ago and ismaking great progress in changing her diet to cut out hidden corn, even taking her own food to events (and having people steal it off her plate since her food is better than what is being served!). With her permission, I bring you some of our conversation:

Christine,
...You are in the back of my mind as my "horrible warning" when I eat. (that
doesn't sound right, but you know what I mean) You have really helped me get
a better understanding of what a corn allergy means. For you it is a
disability. I am truly hoping that I can maintain my life as-is. When I
fall off the wagon my reactions have been...not life-threatening. I do
think of you when I do it...makes me feel not so alone.

-s

SushiQ,

I had to laugh when I read about being the horrible warning; one of these
days I'll be a good example. Ha! I think the horrible warning is much more
effective.

Years before a food allergy was ever suspected I started to think I had
problems with sugar because whenever I had something sugary, like cake or
soda I'd start to feel flushed and ill. Sugar in my tea wasn't a problem but
most sweet foods were making me sick; I now know that I was reacting to all
the processed corn syrups. This was just after I had returned from several
years in Asia where I was not getting a lot of corn sweetened foods or
general corn in my diet. So, that was the point where a diagnosis (perhaps)
could have stopped me from getting to my current point of super caution with
food.

Easy to see in hindsight, but I was in grad school and far too consumed with
studying to pursue it other than to avoid foods that were making me really
sick. I didn't figure it out and eventually got to busy to pay attention to
what was going on with my health; work, work and more work. I escaped the
American food system 2 more times with work in India and Nepal and now that
I think about it I noticed problems with food at home after being out of the
country for few months. Taking that break from corn was enough to make me
aware that I didn't feel right after eating a lot of processed foods. But I
never made the connection with a real food allergy till I had my first
anaphylactic reaction. After that, I started to become the horrible warning.

If it helps you move through the learning curve for avoiding corn faster
than I did (it took me YEARS) or makes you think twice before eating
something iffy, then being the horrible warning is well worth it. You are
not alone, there are more and more of us diagnosed with some level of corn
allergy or intolerance every week. Don't be like Christine isn't much of a
slogan, but I do hope the idea that no matter how severe your reactions
are this allergy is manageable, comes through on the blog.

We're in this together and I'm on your team!

-c

It seem to me, SushiQ and all the rest of the corn allergy people, that there are more of us every day and we certainly are on the same team. I'm still hoping to have one of those perfect moments at a function where I am standing around with a glass of mineral water while everyone else is eating and drinking. I can see it perfectly -- I look across the room...there is someone else with just a glass of mineral water... and an allergy bracelet...our eyes meet...across the crowded
room...we say in unison "CORN ALLERGY!" The ensuing hysterical laugher may disturb the rest of the guests, but I plan to introduce myself as "Christine, Horrible Warning."

Cowgirl up

Till about a year ago, I'd never been particularly obsessive about anything. I've regarded this allergy experience as a cross between a scientific experiment where I am both subject and observer and a guessing game with some nasty consequences for losing. About a year ago I fully gave up on making myself sick with the food I love[d].

Many years ago, a doctor had said about a vitamin I poisoned myself with (it said corn free on the label), “If you don't know what the heck is in it, don't put the darn thing in your mouth.” Smart woman.

Now, if I don’t make it I don’t eat it. My food comes from a nearby organic farm, grown by an amazing group of farmers. It's local, in season, from people I trust.

There are a few exceptions to that rule, currently readily available are a few canned organic soups, milk, spices and a box of rice crackers. The rice crackers may be on their way off the safe list; they never were the most appealing food, but made a good emergency backup to keep in the car. This is all in the past tense, because somehow I poisoned myself with one of my safe, lovely, bland crackers this afternoon. While snacking on one during a coffee break, I was hit by an odd thought. “Wow this tastes great! Kind of like a Sun Chip, a little sweet, crunchy, tangy...”

In the microseconds it took for that thought to form, alarm bells began clanging in my head. “Wow, this tastes great!” has often been a phrase that precedes a reaction for me. Internal strobe lights streaked across my brain, Warning! WARNING! Get it out!! OUT! Finally my reflexes kicked in and I, oh so gracefully, spit the chewed up cracker into my hand. Since the allergy lifestyle involves experimentation, I had to look to see if it was different somehow than the rest of the crackers. Nope. Not that I usually examine my food when it is in bolus form, but it the color and texture seemed normal.

For a second, I though I had done pretty well not to swallow the cracker, till I felt the warning tingle in my lips and nose and the real emergency response kicked in. GET IT OUT was echoing around my skull as I ran for the bathroom to rinse out my mouth and brush my teeth. Not fast enough to keep myself from needing meds, but good enough to avoid the Epi-pen.

Now I’m dizzy, nauseous, achy and about 2 seconds from crying because I’ve lost some convenient crackers from my set of safe foods -- I can barely stand to be around myself when I get like this. In the grand scheme of things, there are so many worse things that could happen; no one is shooting at me, there are no tigers waiting to eat me and I am far from starving. As MTB would say, “Time to cowgirl up and get over it.” I’m just going to have to be more vigilant about the If I didn’t make it, I don’t eat it rule. I may not want to cook every day, but that is just too darn bad, do it or be hungry.

There is still a choice available, eat what is safe or don't eat. Amazing food from a wonderful farm comes once a week through the CSA, I'm fortunate enough to know the incredible people who grow my food and know that it is all safe for me to eat. They are kind, concerned and careful with my food. Why bother with something that may or may not be okay? Why even support a food system that is not safe for me or anyone else who needs to know what is in their food?

Two statements that really resonate with me when I think about our food choices:

We can still decide, every day, what we're going to put into our bodies, what sort to food chain we want to participate in." - Michael Pollan, Omnivore's Dilemma

and

"How we eat determines to a considerable extent how the world is used." - Wendell Berry

If you have a severe corn allergy, the general American food system is not safe for you. The shipped green, waxed, gassed to ripen, processed and packaged food that is so very convenient and so easily available is poisoned with corn derivatives through and through to keep it fresh, keep it shiny, retard the growth of e-coli or make it smell good. Ick. The corn used in packaging and processing is not required to be disclosed on the label. Double Ick.

It took years of trial and error, truly years of poisoning myself, for me wise up and make a choice. It took more time, more research, and more frightening experiences than I would wish on anyone for me to get to the point where my safety and health outweighed my desire for “normal” food. Now my cravings are for understanding, adaptation and safety. The fact that this allergy resulted in my eating fresh, local, delicious food is a great bonus. I owe my health and quite possibly my sanity to my farmers. Thank you! Thank you! Thank you!

Do you know where your food comes from? If you don’t, are you really managing your allergy?

That’s the question I’m going to ask myself the next time I’m temped to go for convenience.

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Find a farmers’ market, sign up for a CSA, get local food near you:
www. localharvest.org
Find out more about the multiple benefits of local food at:
www.foodroutes.org

Buy Fresh! Buy Local! Be Safe!

Ordering Nothing

Having Ted in town gave me the opportunity to test the eating out without eating theory. Eating out without eating is just ordering something small so you don't have to sit there with nothing in front of you, toying with it and/or getting your companion(s) to eat it. You've ordered, so you've fulfilled the general function of a patron in a restaurant, but you haven't eaten anything you are allergic to, so you are not sick. Win/win in my book.

This won't work in every situation, you will need:

1. An easygoing dinner companion, preferably one that is hungry
-someone who understands your allergy, knows you can’t eat anything off the menu
-someone interesting enough that you are there for the company, not the food!
2. Forethought and planning!
-eat beforehand
-warn your dinner companion that you are going to order an appetizer only, and you are ordering just to order and you need someone else to eat it :)
-don’t order something made with your allergen or a food that you have a hard time resisting
3. The ability to act
-you can still look happy to get the food and enjoy the smell (as long as you are not hungry, this will be fine)
-share with your companion, but be sure you pick up your silverware and play with a few pieces, nudge a bit around, sip your drink, use your napkin

Truth is, at a restaurant people are not paying that much attention to anyone outside their party, so as long as you have decent manners, you can save yourself the big song and dance about your allergy by just doing the appetizer trick and getting a safe drink (mineral water for me, or a cup of tea --yes, I carry corn free tea bags in my purse). I tip like I ate a real meal since I’m still taking up the same space and time from the staff.

Ted is more easygoing than most, so my playing with the calamari while he ate didn’t bother him at all. As I've said earlier, I was there for the company, so I was having a great time. The lack of food for me wasn't an issue since I wasn't hungry.

I don’t know how well this would go over with someone not so well adjusted to my restrictions or so relaxed. I’ll keep you posted.

(There is always the other option of calling the manager, bringing something you can eat, having them put it on a plate for you and playing a plating fee. And, hoping that it doesn't get contaminated in the kitchen. Of course, I am REALLY careful, due to the severity of my reaction and not wanting to waste time with a reaction while I have a guest.)

I’ll have a ?

Recently spent two evenings lurching down memory lane with a college buddy in from the West Coast, no Benadryl or Epi-pens involved. The lurching was due to visiting some of the haunts where we had whiled away a few evenings debating the meaning of life, swapping stories of our latest adventures and dancing off stress. My companion for this time travel was was Ted, gentle readers who know him IRL already know this means a visit to every bar from our salad days. For those of you that are fans of 70’s TV, his blog pseudonym comes from a M*A*S*H episode, enough said*. He took me to my first bar in the States and taught me how to tip for drinks, so this re-visit, complete with new lessons, was particularly apropos. (Point of clarification, I'm not completely without social graces. I'd turned 21 in the Philippines--had been traveling/living in countries w/out the drinking age restrictions or tipping so I missed out on that all-American rite of passage.)

I’ve always preferred caffeine to alcohol, ordering like Radar O’Reilly never botheres me. These days the grape Nehi’s all have corn syrup or other corn derivatives, the only really safe drink is a bottle of natural mineral water; something like a Perrier or San Pellegrino is perfect. Not all bottled water is corn free; I’ve been poisoned by Dasini and Aquafina which makes me leery of any purified municipal water that has minerals added.

I’m great to take out for drinks – as I’ve had pointed out soooooo often by friends and family, the allergy makes me a cheap date. No fancy-shmancy $12 cocktails for this gal. Another point in my favor is happy designated driver status, no worries with me at the wheel. Two points – however, going out for a drink in a college town wipes the board clean. Unless you have someone like Ted along to charm the bartender into grabbing some Perrier from the restaurant next door, it’s a cup of water from the drinks gun (definite cross contamination) in a plastic cup (possible use of corn oil on the cup) with a straw (ditto) and, if you are really lucky, a corn-waxed wedge of lime. I was there for the conversation not a drink, so no problem for me. Happy and laughing is a good day in my book. Great friend + witty conversation, what more could I really want? Ted’s chivalry kept bubbling up, so off we’d go to the next den of iniquity in search of good music (abysmal failure) and the elusive Perrier. In two nights on the town, one bar and one restaurant out of an entire college town managed a corn-free cold drink. Not even the nice gay bar could do better than a glass of water. *shrug*

I can’t say that the lack of options of this bothers or surprises me. Three lessons, I guess. One, I need to get out more (surprise!). Two, you can’t expect to get a grown-up drink in a college bar. Three, if you do want to have something to drink, listen to your Uncle Ted: be prepared; throw a couple of chilled bottles in that big bag with the Epi-pens and Benadryl; smile; show your medical alert tag; explain nicely and ask if you can pay a corkage** fee for bringing your own drink. If they don’t want to charge you, be sure to tip well.


**Yes I know it’s a screw top on the water, humor me.

_________________________________________________
*It's so difficult to adequately describe a friend in less then a few pages, they come off sounding so mono-dimensional. The best I can do in a small space is to say Ted is a bit of Hawkeye Pierce combined with Captain Sam Vimes and Ocsar Wilde with a soupcon of Ford Prefect. He has a wicked wit covered by a angelic grin that would make Michelangelo weep. Still missing a lot, but for now it will have to do.

Living With Food Allergies Carnival

Welcome to the May 28, 2009 edition of Living With Food Allergies Carnival.

Managing your Food Allergy and Your Life:

Gabrielle shares A Lesson: Always be Diligent about Labels posted at Peanut Free Mama.

Karen Blue tells us about Planning a getaway posted at Avoiding Milk Protein Blog, saying, "Tips for traveling with allergies"

Ruth Smith presents Entering School With Food Allergies posted at Best Allergy Sites.

Jennifer B has a warning -- Beware Food Allergy Profiteers posted at Food Allergy Buzz.

Lara DeHaven answers the question we are always asked: What Do Ya’ll Eat? | Texas Homesteader posted at Texas Homesteader.

Christine has another good side to food allergies, with The Food Allergy Test of Character posted at Corn Allergic: What I Reacted to Today. She says, "Friends, co-workers and family who pass the food allergy test of character are worth their weight in gold. How many people in your life have passed the test?"

Christine also shares a little corn allergy humor, about one of those really I'm not crazy, I just have a severe food allergy days in Exactamundo! posted at Corn Allergic: What I Reacted to Today.

Recipes and Recommendations:

Lara DeHaven will make you hungry with My Favorite Wheat-Free Products | Texas Homesteader posted at Texas Homesteader.

Ruth Smith has good news in HomeFree: The Healthier Cookie Alternative posted at Best Allergy Sites, saying, "HomeFree has a new and dedicated facility. Read what they are doing to keep their cookies and our kids safe."

Ali from Whole Life Nutrition shares a yummy recipe Dark Teff Sandwich Bread posted at Whole Life Nutrition.

Alisa presents Sweet Sundays: Dairy-Free Rice Puddings posted at Go Dairy Free.

Alisa some great ideas with Homeade Turkey Breakfast Sausage - Quick & Lean posted at One Frugal Foodie, saying, "Versatile recipe can be used with turkey or pork, and is great for avoiding food allergen fillers that linger in so many meat products. Also economical!"

Sure Foods Living has tempting treats, Ice Cream Cookie Sandwich - gluten-free, dairy-free, egg-free posted at Sure Foods Living.

Sure Foods Living has a lot of information for you on Hot dogs and sausages: gluten-free and dairy-free list posted at Sure Foods Living.

Gabrielle has a find for the peanut allergic vegans out there, Vegan with a Peanut Allergy? Have I got a product for you... posted at Peanut Free Mama.

Rachel tempts you to get cooking in Love and Apple Pie posted at Rachel's Recipe Box, saying, "This is an allergy-friendly, gluten-free apple pie"

Alisa has good information just in time for summer on Choosing a Sunscreen for Sensitive Skin and Allergies posted at Go Dairy Free.

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That concludes this edition. Submit your blog article to the next edition of Living with Food Allergies Carnival using our carnival submission form.
Past posts and future hosts can be found on our blog carnival index page.

The next Carnival will be June 11, hosted at The Allergic Kid.

Technorati tags:
living with food allergies carnival, blog carnival.

Exactamundo!

"Not crazy, corn allergy."

That line's been pulled out a few too many times for comfort in the past week. It's always delivered with my best toothy grin and a laugh, I'm hoping I can just be one of those quirky gals, not the crazy lady.

It's not enough to be allergic to what I eat or drink, what I touch can be a problem. I've been doing a lot of volunteer hours with new sets of people lately, I may only know the director and she doesn't know the full extent of my precautions other than having to count me out when food is involved. Because of this I wind up in some corn-y situations that are safe enough as long as I don't have to touch anything.

Like any reasonable adult, I go into this well prepared, with a pair of gloves in my back pocket. Along with my allergy gear, I also carry a box of latex-free (be nice to people with latex allergies!) disposable, unpowered gloves in the car. This latest box is great, they are just the right size, with textured fingertips to make it easy to pick things up. Unfortunately, they are also a delicate shade of lilac making my Willy Wonka hands difficult not to notice.

So, "Not crazy. Severe corn allergy." Out come the gloves, and Ms. Wonka is ready to tape up signs and handle all manner of poisonous objects.

I'm fine with this approach, its practical, efficient, I look a little quirky or germaphobic but I'm getting the job done. I'm cool with it, really. Cool like the Fonz, till that moment I peel off the gloves, carefully keeping them inside out to contain the contaminants, and scan the room for a hazmat bin to drop them in. I still can't suppress the shudder when I put them in the regular trash.

Quirky? Exactamundo!

Submit Your Posts for the Next Food Allery Carnival!

It's almost time for the next Living With Food Allergies Carnival, so please submit your posts!

I'd love have a theme with lots of posts on the upside of food allergies or a positive change in your life from having a food allergy or food allergic person in your family -- but really, any post about living with food allergies would be great! Recipes, challenges, how you cope, what you reacted to today...whatever is on your mind!

Go to http://blogcarnival.com/bc/submit_2597.html before 9pm on Wed May 27th and submit your post. If you have a problem, email me at cornallergy at gmail (dot) com

I've been deluged with a bunch of spam posts about miracle weight loss foods and how to live your life with prosperity and success. Umm. I'm falling to make the connection with food allergies.

So, anything to do with living with food allergies, send it in. Anything on another topic, sorry wrong carnival.

Passing the Food Allergy Test of Character

I've changed.

For the better and the worse. Quelle surprise.

For the better, I take better care of myself and have stopped trying to find "normal people food" that works for me. I'm as done with looking for substitutes, I've moved on to enjoying the complex tastes of my organic locally grown veggies and trying to get as much corn-free protein as I can.

For the worse, I test people like I test food. No, I don't use the poison protocol with them, but it gets close. :P (Besides, if I did a patch test with most people, I'd probably react) It is not a fun thing to do and worries me while I do it since I always want them to pass. But, the people challenge isn't as hard as the food challenge test (the Epi-Pen is almost NEVER involved) and you just have to shake it off when someone fails.

In an ethical / moral sense we are always evaluating others, as much as we may like to think that we are not. Is this person trustworthy? Is that guy safe? Is she reliable? The food allergy just amplifies the issue. Allergy parents have this test thrust upon them in a more upfront manner when they are challenged to allow their child to sleepover at a friends house or attend an outing without them. Making the judgment call about the safety of a child must be infinitely more difficult that making that call about your own safety as an adult. I can't begin to imagine the stress. (All my hats are off to you, Allergy Parents!)

As I’ve been writing about lately, I do my best to be upfront, provide disclosure and let people decide for themselves. I hope for the best and try to be prepared for the “ maybe it’s just stress,” “my cousin’s friend’s sister once had food allergies, but she did x, y, and z and she is all better now,” and my all time favorite, “You are not going to get better with that sort of attitude.” As if I caused my food allergies. *sigh* I though we had moved beyond the language of blaming people for diseases. Really, darlings, that is just so 70’s. 1670s.

All semantics and attitude aside, I think there may be another upside to serious food allergies. The food allergy test of character. Those who pass, usually do so with such grace and style that it brings tears to my eyes. Recently I had to do the whole allergy song and dance for a friend I’d been out of touch with for almost a decade, the last time we had worked together I had been the one finding the fun restaurants, now I’m the one doesn’t eat out. I was trying to avoid talking about allergies at all -- just wanted to catch up on the last 10 years, but the idea of getting together for dinner came up. Long story short, as soon as he had gotten a grasp on the corn is in everything issue, and quickly recognized that I’m really not getting enough protein in my diet (I’m working on it, really!) he was brainstorming unique solutions. I was so charmed by this that I may have missed a few great ideas while I was grinning at the phone. Allergy test of character, Gold Star A+.

Went to see a the fabulous Ms. M. in another play last night with my social director, J. While we were chatting during intermission he asked a question about my allergy tag and I realized I never gave him the full brief on my emergency protocol, so out came the Activeaid bag with my Epi-Pens and Benadryl and I did the quick run down. He had some good questions and we got into a bit of a discussion. When I explained about the Epi-Pen, “I can do this myself, but its better for me if someone else does it because I have a hard time overcoming the reflex to pull the needle out before the 10 seconds are up.” J didn’t miss a beat, he calmly replied “10 seconds. I can do that.” I didn’t realize I was stressed about this, till his answer left me almost limp with relief at having someone accept this so matter of factly and be ready to help. Allergy test of character, another A+.

I don’t expect that everyone can step up and say, “You have a reaction when I’m around, give me the Epi-Pen. I’ve got your back.” Or to help me figure out how to solve my food access issues. Mostly, I just hope that people don’t think that I’ve gone crazy and and are willing deal with a few inconveniences in order not to poison me. Let’s try not to kill Christine— it’s a fun game, I play it every day. Poison? Safe? Touch? Don’t touch? Guess!

It’s amazing to have people pass the food allergy test of character with such flying colors. There have also been some spectacular failures, those stories will have to wait for another day. For now, I can happily say that this allergy test involves no needles and usually doesn’t hurt one bit. Kudos to all of you that have aced this one.

I need to find a nice explanation for this and figure out how to tell people that they have an passed the food allergy test of character with an A+, Gold Standard rating . Thoughts?

If I Had An Allergic Reaction: A Video

If I Had - An Allergic Reaction - Dr. Robert Wood, MD from http://www.insidermedicine.ca

Your Wed. PSA

If I Had - An Allergic Reaction - Dr. Robert Wood, MD

Back to Basics

I'm fighting the human version of Ick today; it can't be cured with a little table salt the way my mom used to resurrect our goldfish. The table salt cure contains corn, by the way. People at the office have been calling in or their partners are full blown sick, I have a little bit of a little something mild. The best description I can come up with is I feel like a horse that is off her food. When I couldn’t face my coffee yesterday, I knew something was wrong.

So, I'm not sick enough to actually take a sick day and I have TONS to get done if I actually want one of the three days off this weekend. So, if could treat myself normally, it would be take two Tylenol and a Tums and get to work. That's not going to work. I could get a bunch of extra sleep after the benadryl and the Epi-Pen and the IV benadryl...but that is too much drama for a low energy day. So, alternative sources for common medicines it is.

After the makers of Children's Motrin decided to change their flavors last fall and add sorbitol and citric acid to the new fun tropical fruit and blue raspberry flavor, I lost my last safe treatment for fever. At that point it was time to suck it up and trial the original form of aspirin, white willow bark. No, I didn't go chew on a tree, I went to Whole Foods and talked to their supplements person to find what looked safe for me. (Put it through the poison protocol and it worked). White willow bark contains salicin and was the basis for the synthesis of aspirin. An easier option is to get compounded Tylenol made for you, but at $1 pill, it can get a bit pricy. (Talk to your doc before you make any changes in what you use!)

Tums are out too, so I go back to that cure-all from the last time I trekked to Mukitnath, near the Kingdom of Mustang, in Nepal. Peppermint Tea. Altitude sickness? Peppermint Tea! Guardia? Peppermint Tea! Lost Passport? Peppermint Tea! Snow Blindness? Peppermint Tea! It's good for everything, so I'm sure that it will help with a little ick. Ick? Peppermint Tea!

I'm going to make some peppermint tea and take my willow bark so I can go be a productive member of modern society. Sometimes you have to go back to basics for safety. Next time you can't find a product you need without corn in it, try stepping back to its earlier form. Back to basics is working for me.

If that doesn’t work, Peppermint Tea!