The joys of living with a severe corn allergy in a country that runs on corn! "If you can't be a good example, then you'll just have to be a horrible warning."-Catherine Aird
Sunday, September 22, 2013
You Know You Have a Severe Corn Allergy When (list in progress)
Sunday, January 6, 2013
Let's talk about it!
In the interest of being a good corn-free citizen who has survived an entire decade with a corn allergy and is now enjoying a large corn-allergy and corn intolerant community on the web here are a few good spots to hang out while figuring out how to live a corn-free life.
Facebook:
Corn Allergy and Intolerance Group https://www.facebook.com/groups/cornallergy/
I recomend this group as an interesting place to start for people with either a corn allergy or intolerance. Lots of people with different levels and types of reactions and good discussions. The group varries from people with a strict scientific testing perspective to people who are willing to try anything labeled a cure so there are lots of interesting discussions. Very friendly and helpful members who share info and support one another. The majority of very active posters are from North America, but there are members from across the globe.
Some group jargon that will help you communicate and understand a typical phrase that would be put at the end of a post about a product. If I posted saying something was safe for me, I might write: "I am a swift reactor to contact, inhalation and ingestion, only allergic to corn. I'm corn free, I can't do corn-lite at all!"
Corn Lite: You can eat some foods that are cross contaminated with corn in the processing or have a small amount of corn derivatives and are either ok or willing to put up with the discomfort. Mostly people with a food intolerance or a non-anayphyactic allergy.
Corn Free:You (try to) avoid all corn containing products. Usually due to severe allergies and/or anaphylactic reactions.
Reaction Levels: immediate or swift reactor vs slow or delayed reactor -- this is the amount of time it takes you to develop symptoms to exposure to your allergen, it can be min. for an allergy or much longer in the case of food intolerances.
Sensitive to: Contact (skin), Inhalation (fumes/dust), Ingested (food)
Corn Allergy Awareness https://www.facebook.com/groups/60220625854/
Smaller group, more focus on Canadian products but lots of cross over with the Corn Allergy fb group. Same friendly and helpful vibe as above.
Corn Freedom https://www.facebook.com/pages/corn-freedom/264504334407
Take this page with a grain of salt -- this mom w/ a corn allergic or intolerant child is interested in advocacy, which is great, but is at the beginning of her food allergy journey and IN MY OPINION still is eating/feeding a lot of corn intensive products and mistakenly promoting them as corn free. It may be that her child is able to tolerate corn lite foods, but she sees them as corn free -- it is a typical part of the journey and she is getting more comments from people with more experience w/ corn allergy. As with any food recommendation -- use caution. More interesting to watch than to participate in for me.
Good FB Info pages -- not all corn specific
Corn Free Foods List https://www.facebook.com/CornFreeFoods NOT all corn free, many products are just low corn/corn lite and are tolerated by people with a corn intolerance and need to be tested CAREFULLY by you! There are only 4 safes thing for me on the the entire list, so proceed with caution. This is a good place to start if you are trying to find safe foods, but may foods on there need to be retested. There is a visual Pinterest board maintained by fb folks that is a little more up to date -- http://pinterest.com/stripeysocks/corn-free-visual-the-list/ Assume EVERYTHING is corn-lite and test carefully. It is a good starting point but don't assume that anything is totally safe for you.
Asthma and Allergy Foundation https://www.facebook.com/AAFANational Good info feed.
Team Anaphylaxis https://www.facebook.com/pages/Team-Anaphylaxis/159511227477594 Mostly focused on advocating for children's issues, good info for communicating about threatening allergies.
Food Allergy Mom Doc https://www.facebook.com/FoodAllergyMomDoc Interesting and thought provoking posts from a doc w/ two allergic children.
American Academy of Allergy Asthma and Immunology https://www.facebook.com/AmericanAcademyofAllergyAsthmaandImmunology
Good info on current research for people w/ a science background.
_______________
Outside of Facebook
Avoiding Corn Forum on Delphi -- http://forums.delphiforums.com/avoidingcorn/start The long running, sprawling and full of info forum. There is talk of the hosting platform transferring to a more usable format for mobile devices.
You are not alone! Feel free to send me an email (cornallergy at gmail (dot) com ) and go connect with some of your peers.
Monday, October 15, 2012
Feeling a bit blasé?
Fortunately for me, our wonderful scuba gear guru for the club came over to do all the hazardous material handling -- acetone and silicone glue, even taking the drysuit outside at 10:30 at night so that the acetone fumes would not come into the house! What a guy! I, unfortunately, did not think through how long I had let this glue cure and get washed out the last time I had used it to repair a wetsuit. This time it was going to be pretty close to me, pressurized inside a drysuit -- I should have let it cure for a a few days and washed it for a few more before getting it anywhere close to me. I am now paying for that little lapse of judgement. Also -- I was feeling a bit indisputable since I have been eating prednisone and zantac like skittles to survive a big gala at work.. All and all a recipe for disaster. Hoist by my own petard, mas non?
So, now on day 3 of having hands like catechers mitts and a face like a basket ball, sporty but uncomfortable, I was ready for hypocondria search time on the interwebs. Just looking for a way to reduce swelling post reaction -- I know what I did and that clearly I'm a horrible warning and menace to myself. No need to remind me.
I may, however, may be getting a bit too blasé about this whole "life threatening allergy" concept.
The first answer I found, on WebMD, "Allergic reaction. Sudden swelling of the hands and face may be a severe allergic reaction (anaphylaxis) and needs immediate medical evaluation."
The first thought that popped into my head, "I can breathe, it's not an emergency. This is useless."
When is it an emergency? I noticed during our second descent that I was working too hard and using my air quickly. I was having some issues and brought my buddy back to the surface after about 10 min since we were just doing a quick tour around the shallows to adjust some equipment. Since I felt off, I opted to hang out while the instructor took him out to test his navigation skills. I hung around near the shore testing my new valve and just floating around checking out the adjustments to the suit to make sure nothing was leaking.
When they came back to shore, my instructor noticed that I looked odd -- I told him that I thought was breathing a bit to hard on the easy dive and was going to drink something hot and see how I felt. Also, I opened the neck seal on my suit to see if I was just asphyxiating a just little from being sealed in too well.
![]() |
| Is is a fish or Christine having a reaction? |
My dive buddy, who was working on his skills for his advanced certification, clearly earned his advanced allergy card that day. All I said was "I think I'm having a reaction to my suit, I need to get out of it." He dropped his sandwich on the ground and was ready to jab me with a the epi-pen, cut me out of my suit (Please, please, please, no holes in the drysuit!) or grab the oxygen tank and crank it up in a flash. Had I needed any serious assistance I would have been in good shape. But I was already popping my meds, proceeding calmly and waiting till I could get a hand to get the neck zippers open calmly and carefully, since I'm still looking for a corn-free wax for the zippers. Not only did he get me divested of my corn-y gear in record time, he carried my tanks and heavy gear back up the hill while I staggered around while the corn-free Benadryl was kicking in -- and then he drove my car back home. That is major points in Do Not Kill Christine.
So when is it an emergency? I'm getting good at staying calm and watching what is going on, probably because I don't want to: 1. accidentally drop dead, 2. unnecessarily use the Epi-pen. That's a very fine line. It can be a bit of an out of body experience to watch yourself be almost consumed by the sensation that you choking and the concomitant urge to run in circles making the international throat-grabbing sign for "I. Can't. Breathe! while instead keeping your butt planted in your seat and slowly counting your inhales and exhales. Calm, Slow, In, Out. I'm breathing. My nail beds are not blue. It's not really an emergency.
For me, there are two signs that it is time to crack out the Epi-pens. When, after a few moment (that feel like years) I can't catch my breath after I've moved into the easy-breather position -- head toward knees, shoulders moving up and down with each inhale in an effort to make more space -- and and I'm getting confused about what to do. At that point it is hard to remember that when I can't figure out what to do, it is a sign that it is Epi-pen time. The other sign is the "feeling of impending doom" or just the plain old "Oh $h*%" feeling where it becomes clear that this is not going to end well.
Then it is Epi-Pen time.Uncap, swing and jab firmly into thigh. Fight the urge to pull it out at the first sting and count to ten. By the time I get to eight, that band that has been tightening around my ribs and the squeeking stiffnes in my lungs has disapeared. The world starts to swing back into focus on nine and by ten, I'm gulping in a full breath and so so so so very happy that I can get so very much air into my so very open lungs. Bliss for a moment or two, while I grab my allergy buddy and head off to the ER to get stabilized.
I've had two rebound reactions, so I'm a big believer in following up with IV prednisone, benadryl and a nice nebulizer of albuterol or xopenex. And in theory being observed for the next 6 hours. That depends on the ER. I have had a few reactions where I can see in retrospect that Epi-Pen would have been a good idea, but it ended well and I had a watcher with me at the time. I just didn't want to go spend the next 8 hours in the ER particularly on a weekend night when it would be full of the drunk/drugged/overdosed/crazed. Afternoons are a much better time. But really, that should not be a factor in the decision.
Not every reaction sets off the entire cascade where I need to go to defcon-whatever and jab myself with adrenaline, and I do live VERY carefully. When it does, I am SO grateful that to have Epi-pens. I'm even more grateful to my absolute rockstar friends who will jab me, since it is hard for me not to flinch and pull the pen back out when it stings. That's a real friend.
Today I look like a cross between an unhappy grouper and a baseball beta-version of Edward Sissorhands. I'm conjested and less than 100%, but I can breathe. This is not an emergency and not likely to become one unless my fashion crisis, of wanting to wear a retro hat w/ a veil till I look less pelagic, counts.
When is it an emergency for you?
A handy site that lets you prepare a customized anaphylaxis / Epi-pen action plan: https://allergysafecommunities.ca/pages/emergency-form.asp
You can add your photo, specific allergy information and 3 emergency contacts. There are also fill in the blank sheets with Epi or Twinject instructions available
https://allergysafecommunities.ca/pages/default.asp?catid=38
Saturday, October 6, 2012
It's just food --people!
Right now I'm in the car outside of a funeral home. I'm going to the outdoor service but avoiding the jammed together with perfume and makeup wearing people part of the day. Hugs and kisses will be bad enough for my over active immune system. There is only so much you can do to change the behavior of elderly relatives who wear powder, perfume and lipstick and give you a big smooch on the cheek when the see you -- I'm happy to see them no matter what the occasion and as long as I'm not turning blue and flopping around on the floor, I'm ok with the fact that I'm going to have a hard time breathing for a few days after I touch them. Que Serra. There is only so much you can control.
What we can control, as food allergic people and food allergy parents is the food we eat and feed to our children. I've been both worried and dismayed by the number of people 1. are willing to "cheat" or regularly eat "corn lite" and admit to eating/feeding things they know are not safe to their children 2. . seem confused and surprised by how reactive and generally ill they are 3. spend a great deal of time and money on substitutes for "normal" food.
This is not just a corn allergy phenomenon, Ira Glass did a intro segment on This American Life with clips of people with food allergies who regularly wind up in the ER because they knowingly eat food they are allergic to -- repeatedly. Holy Flying Monkeys People! IT'S JUST FOOD! Living without a single food is not going to kill you, eating it just might.
With the corn allergy, I'm constantly exposed to blind tests where I will react to something in the air or on my skin. At this point, I can't imaging willing eating a handful of popcorn or biting into an ear of corn on the cob -- even though I can remember how good they tasted.
It's just food. I'm not starving. I really like breathing. I live in the US, I have access to locally grown corn-free organic fruit and veggies that I fortunately can afford to buy (instead of expensive shoes). Why should poison my food just because I'd like some mayonnaise on my tomatoes? I just don't know.
Seriously? It's just food! Have a food allergy? Do the hard sleuthing to find out what is safe for you. Eat that.
Please don't poison yourself knowingly. Is there something you love to eat that makes you or your child sick? It is poisonous to you/her/him. Poison. Period.
Be healthy. Live long. Prosper.
Saturday, April 16, 2011
Wecome to Absurdia
Yesterday morning I was just going to make it on time to work when I got stuck in traffic. The normally swift moving highway went from creeping along to a complete standstill. As I sat there worrying about being late and trying (unsuccessfully) to log onto my work email via phone I started to feel the beginnings of a reaction-- tingly lips, painful joints, itchy throat. It wasn't something I eaten, since I'd postponed breakfast in favor of taking the dog for a springtime run. I had a paranoid thought that it was the exhaust from all the cars sitting still and made sure the air was on recirculate.
After a lifetime in traffic I finally approached my exit, where rubberneckers slowed things further with taking time to gape at a the accident made frighteningly beautiful by firetrucks spraying shimmering arcs of water over the highway onto a flaming tanker. As the full trucks sped back down the highway in a water-relay, police directed morning commuters slowly through the exit.
Chest tight and throat itching, I finally made it into the office where I can top off my daily dose of allergy meds and histamine blockers. I start digging through my in-box and get an email that puts me at risk for a cerebral aneurysm -- I can blame my slowly worsening symptoms on this.
Feeling like I'm on the edge of a major reaction make me nervous, which has the potential to make things worse. I do a little yoga breathing and take care of a few happier items before calling my direct teammate in the main office. "Amy." She has a friend with mega-allergies and a husband who is an ER doc and a good sense of humor, thus she can be relied on to be the voice of sanity. I call her to update her on my having made it into the office and joke that that everything will be fine as long as its not a popcorn truck that is burning.
Despite my pledge to keep my whining to a minimum, I'm tell the only other person in the office (my wonderful emergency contact) that I don't feel so good when she says makes the connection to the burning tanker truck. I honestly don't think a popcorn truck is on fire and the 10% ethanol gasoline in even the biggest truck engine would have burned away so quickly that it can not possible bother me.
Welcome to Absurdia.
She quickly finds the news: Ethanol Tanker Crash -- 8,000 gallons of ethanol are burning about half a mile (800 meters) from our office. Fire crews are keeping it under control while the fumes burn off. The highway will be closed for the next 5 hours as the truck burns.
I need to have my passport stamped, clearly we are not it Kansas any more.
I'm visiting Absurdia today. The thing I'm deathly allergic to is spilling on the ground, putting fumes into the air and ON FIRE across a big field from my office. That's why my lips are pufffed up and my throat itches. That's why my chest is tight. That's why I'm dizzy. That's..uh....it could EXPLODE!! OH. For. Pete's. Freaking, Sake. 8,000 gallons of CORN on FIRE is a terrible, horrible, no good, very bad day in anyone's book.
The good news is I'm not at risk for an aneurysm (today)...I can stay and hope that this is as bad as it gets. Or I get the heck out of dodge before something worse happens -- like the tanker exploding. I may think my job is important but there is nothing that requires me to risk my life, we are not preforming surgery or talking people off ledges.
Epi-Pen in hand, I take a couple wal-dryl* and drive home (not recommended procedure) to put my head under the pillow till I feel ready to deal with Absurdia. I may be having culture shock.
Wonder if I'll need a visa and shots if I'm staying for awhile.
*Walgrenes benadryl -- listed as "virtually" corn-free on the corn free foods list
Thursday, November 26, 2009
The blessings of food allergies
I may not be so thankful this evening after being around 21 regular people who wear makeup, perfume, and use scented detergent. At this moment, I'm happy, I'm healthy and I'm full.
We cooked an heirloom turkey from farm yesterday. The first turkey I've had since high school. Just washed it, rubbed it with some good olive oil, some sea salt and organic pepper and stuffed some fresh rosemary, sage and diced onions inside. This toddler sized bird went on top of more onions and fresh spices and a cup or two of water -- into the oven for a few hours. I had no idea how amazing turkey is -- as a matter of fact I may have some for a snack now.
The blessing of a food allergy -- even before this allergy progressed to the instant karma of anayphylaxis, I would get sick during the holiday feasts, without a clue as to why. This year there will be no crazy indulgence, this year there will be no pumpkin pie or cranberry relish but there will also be no wobbling florescent jello ring with suspended bits of chemically altered and preserved fruit making me ill. There will be no corn-syrup marshmallow topped sweet potatoes and no joint pain. No butterball turkey (injected with corn filled saline) and no crashing headache.
This year there will be a feast. Made by me. There will be squash, turkey, field greens, spinach, sweet potatoes and carrots all from a local farm.
This year I will be healthy and thankful and full.
Friday, July 24, 2009
Fashion Crisis
I took me three tries to get dressed for work today. Not because I'm particularly fashionable, if is clean and matches I'm good, but rather because each outfit kept failing the one important criteria that only occurred to me after I had gotten fully dressed for the first time.How will this work if I wind up in the ER?
Outfit 1. The skirt has to go, too cold in the hospital. Once the IV goes in I'm begging for warm blankets from the Bearhugger.
Outfit 2. Rejected again. The pullover sweater is comfy for the dentist visit, the reason for my considering the ER as a possible destination today, but I don't want to get my head stuck in it when I am trying my best to breathe. Pullover is out.
Outfit 3. Pants. Button-up blouse. Button up sweater. Warm, soft, easy access for those heart monitor stickies if needed. Light on the jewelry, Medical Alert easily visible. Purse with Epi-Pen, other emergency meds and a list of corn-based ingredients.
Perfect.
Bring on the dentist and all those chemicals. They were great the first time and I hope they can continue this streak. I have a designated friend to meet me at the ER if everything goes wrong and a good day planed after this if everything goes right. Either way, I'm ready.
Wednesday, July 15, 2009
Open Wide
There are better ways to introduce yourself than " Hi, I have a new patient appointment for tomorrow afternoon and I have a bit of a strange question. I have a severe corn allergy which means I can be allergic to the powder used on medical gloves. I want to make sure that it is not a problem if I bring gloves that I am not allergic to for the dentist to use."The nice man who answered the phone assured me that they have people with allergies come in all the time, so they don't use latex gloves. After three rounds of "I'm not allergic to latex I'm allergic to the powder that is used on latex or latex-free gloves," I got the okay to show up with my pretty purple gloves for the dentist to use.
Step one, done. Now all I need to do is get them to rinse off everything that comes out of packaging before it goes in my mouth. I'm sure I'm going to be their crazy patient for the day -- maybe the week or the month. But I am SO not in the mood to get sick for the sake of being polite. So, the thing I need to remember going in to this is to be firm, rational and clear about what I need to be safe.
Frankly, it makes me quite nervous to put anything unknown, or out of my control in my mouth. I don't eat processed food, why would I be okay with opening my mouth for one of those dental x-ray things fresh out of the packaging? I want to know what is in/ on it, what it has been wiped or powered with, what was on the line where it was made. Too many questions that no one has ever asked the dentist, questions that they will have no idea about.
Firm, rational, clear. I can do this.
This may not be the most fun day I've ever planned, but I chipped a molar and need to get it fixed now. Tomorrow is just x-rays and consultation. No cleaning, no chemicals, not a lot that should be too out of bounds. It is a good chance to talk to them and see if they can work with me or if I need to try another office. I have no idea what I'm going to do about getting my tooth fixed. Pre-medicate and hope for the best?
Firm, rational, clear. And calm.
Breaking in a new set of people not to kill me, medical professionals at that, is not as easy as one would hope. The corn allergy is a rare enough diagnosis (particularly as reactive as I am) that they may not have encountered anyone with this little issue and can dismiss my strange requirements as those of an over reactive hypochondriac - till it is time for the Epi-Pen and the ER. If they have a sense of humor, I will be fine. Pretty purple gloves, safe soap; honestly I'm not crazy, I'm just trying to keep breathing.
Firm, rational, clear, calm. And in control.
It is too easy to become passive in a medical situation -- doctors, dentists all have worked hard for their expertise and I am there because I need their help. We've been taught to be good and cooperate to get the best care. Reverting to a child who says "Ahh" when told to open wide is not going to do me any good tomorrow or any time in the future. I need to remember that I have a uncommon problem that can be life threatening. If they can play Let's try not to kill Christine today I'm happy to be there. If they can't, I don't have to stay.
Firm, rational, clear, calm, in control. With a happy smile.
Open wide? With caution, thank you.
Friday, June 26, 2009
Breaking Rules
I hate this reaction because I feel each little bump erupt, and have a hard time not getting irritated. Like with most difficult situations, staying calm seems to make reactions less intense, more bearable. When you've just poisoned yourself and your instant karma is small points of pain, it can be a bit difficult to remember this.
Over the last few years I've broken myself of the habit of chewing on pens, putting a hairclip in my teeth while doing my hair, holding nails in my lips. The thousand thoughtless things that touch our lips in any given day are now off limits. A pen fresh out of the box is just as off limits as a pen from my desk. It's not germaphobia, it's possible corn contact. I have no idea what as used in the factory or even what was on the hands of the last person that touched this thing. Maybe it is skin safe, but do I really need to take it to the next level of testing by putting it in my mouth? Yikes.
I take for granted that my internalized rules of behavior will keep me safe. Apparently I need a refresher this week.
The crash course:
- If you don't know what is in/on it, don't put it in your mouth.
- Be prepared, carry your emergency supplies everywhere, everyday.
- Speak up, if you need something to be changed to keep you safe.
- Move it, get and stay away from airborne sources of your allergen.
- Stay calm, try to relax and give yourself a break when reactions happen.
We all make mistakes. Lately it feels like I do more so than most. I have 2 new foods lined up to trial this weekend, but this makes my third minor reaction in a week, so no go. I need at least 5 clear days before risking anything new. Ke garne? Something to look forward to next week.
Be safe. I am your horrible warning.
Wednesday, June 24, 2009
Besties
I'm ridiculously over attached to my best friend. My dependable, there for me, ready in pinch, always got my back, never out of reach best friend.I think I used to be more normal (though my Lakota brother may disagree with that one). Not so long ago my best friend was human. I haven't gone completely around the materialist bend, at least it's not diamonds that are this girl’s best friend.
I never, ever leave home without my best friend. Not for a walk, not for a quick trip to the store, not to go to a meeting, not for anything. Ever. Er..except today.
Today is not a good day to die, but I carelessly, friendlessly, sauntered in that direction.
First mistake, leaving home without my best friend, the Activeaide bag (2 Epi-pens, Benadryl, Gloves, Zantac).
Second mistake, deciding being on time was more important than being safe. Fortunately I had backup Zantac and Benadryl in my work bag --put some in my back pocket and headed out to a work luncheon (where I was not eating, of course).
Third mistake, not making a graceful exit when I saw the corn on the cob being served. I thought, “Outdoor venue, no problem I’ll just stay far away.”
Fourth Mistake...that's enough. Suffice it to say I earned another stripe on the horrible warning badge today, took Benadryl with no backup and hoped for the best. I’ve only had fumes from cooking corn require an Epi-pen once, today was not to be the second time time. After it was over, I zoomed home to grab the purse with my Activeaide bag.
---
I generally have to laugh at the foolish mistakes I make, since in the grand scheme of things my problems are rather minor and manageable. But, even with a large dose of perspective, there are still moments where I scare myself.
Driving back to the office after picking up everything I needed to keep breathing in case of an anaphylactic reaction, I attempted to drown out the internal chorus of "Fool!" by cranking the CD to window rattling volume. Instead of helping, hearing Tod A. growl out "This is no joke, this is my life," loosed the last reserves holding back the fear. Springing out, all the worse for having been compressed, the consequences I had managed not to think about found physical expression in shaking hands and blurred eyes. Trying to cope at 60 miles an hour, I sang along with Tod through chattering teeth till the adrenaline wore off.
I'm still learning to manage this allergy on my own. Odds are, I'm going to screw up. Such is life. I'm lucky to be able to live and learn. After I post this I'm putting my backup Epi-pens in my work bag along with the extra stage one meds. Lesson learned, better preparedness in the future.
Then I'm cranking up the rest of the my new music* and dancing around the house till I can't remember what fear feels like.
*(Thanks for the all the music Jed, it’s 100% corn free and fantastic!)
Thursday, June 18, 2009
Christine, Horrible Warning
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."
Monday, June 15, 2009
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:
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.
www. localharvest.org
Find out more about the multiple benefits of local food at:
www.foodroutes.org
Wednesday, June 10, 2009
Ordering Nothing
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.)
Thursday, June 4, 2009
I’ll have a ?
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.
Thursday, May 28, 2009
Living With Food Allergies Carnival
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.
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.
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.
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.
Wednesday, May 27, 2009
Exactamundo!
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!
Monday, May 25, 2009
Submit Your Posts for the Next Food Allery Carnival!
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.
Friday, May 22, 2009
Passing the Food Allergy Test of Character
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?
Wednesday, May 20, 2009
If I Had An Allergic Reaction: A Video
Your Wed. PSA
| If I Had - An Allergic Reaction - Dr. Robert Wood, MD |
Tuesday, May 19, 2009
Back to Basics
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!

