The Little Things

What is it about one small restriction that seems to encompass my life?  It touches everything.  From dinner time, to snack time, to leisure time, to craft time.  It's not just that I can't ingest corn derivatives.  I can't be around them when they are airborne.  And the fact that I have this unique intolerance (which touches all sufferers in unique ways) means that I can not be a pillar.  I can't be in a position of supervision because I can't be reliable.  There are too many variable in life to prevent exposure completely.  Which means reactions are impossible to predict, and just as impossible to ignore.  Which, to put it bluntly, makes me unreliable.  Not irresponsible, mind you, simply unreliable. 

A corn allergy makes me different.  It does separate me from the others.  Go out for coffee?  Sure.  But I won't be drinking any.  And we need to sit outside.  And...hopefully the rest of the group is up for that awkwardness.  Because, right or wrong, there is always some awkwardness. 
Group projects are a challenge too.  It seems like most work done in a group setting convenes around food.  Pizza.  Coffee.  Yoghurt.  Even donuts.  You meet at a restaurant, or in a small room and bring food to break the ice. 
Corn allergy, that sort of puts the chill back in the air.  Sometimes, I get so used to this allergy that I forget that I'm the oddball out.  I simply can't be a part of 'that' group.  I have restrictions. 
It's the simplest little things that fall through the cracks.  And those little things are the ones discussed over popcorn in informal gatherings, or pizza after the official meeting.  Little things that no one thinks are important.  But they're details.  And without those details, it's hard not to feel left out, as friendly and open as everyone else tries to be. 
It's not intentional.  I want to stress that I realize it's not intentional.  (I have to tell myself not to be paranoid when these things come up)  But it's usually an unexpected shock, like someone balanced a bucket of cold water over the front door and I'm the one who opened it. 
Corn allergy so drastically impacts what we eat, our dining options as well as choices, that it carries over into every aspect  of our lives in ways that other food allergies and even Celiac Disease do not.  All food restrictions are hard, but when it comes to corn, that's when I feel really different. 
And when I think about why I missed these little impromptu gatherings where details were addressed and dismissed, it's generally the corn aspect that lies at the root of things.  I know from the outside I look like I'm just not interested.  But the fact is, the risk just doesn't outweigh the potential bonding.  I love chatting informally outdoors where I'm not assaulted by perfume or personal care products, and food fumes disperse quickly.  But it's hard to get motivated to go somewhere to watch people you almost know enjoy a meal. 
And it's hard not to feel like you're in the spotlight when it's the little things you don't do, that make you miss the details. 
It's not a bad thing, necessarily.  It's just different.  Another little quirk.  Quirks can be endearing, they can be overlooked.  It just takes a little work.  And a little more work to keep track of those teensy little details that slip through the coffee-hour cracks.  And, of course, a good sense of humor to avoid letting those details get to you.  (This is the part I'm struggling to keep this weekend) 
Corn.  It doesn't just affect our diet.  It affects our lives. 

Corn Crazies

I can have chocolate.  But not Hershey.  (Or Dove, or Palmer, or Nestle)
I can have eggs.  But only certain, specific eggs.  Not generic grocery store eggs.
I can eat apples.  If they are unwaxed and peeled.  But that doesn't mean I can have any old applesauce.
I can eat rice.  But only if it's un-enriched, and only from certain farms that don't grow corn. 

The restrictions sound crazy.  Laughable, even.
I can remember being relieved that I was "just" allergic to corn.  Just corn.  It sounded so easy.  But things got harder, I sought help.  I started reading and found a community of corn-allergic individuals.  My eyes widened, I shook my head, I congratulated myself on not going overboard.  And then, slowly, I learned that I needed to be just as fanatical as others seemed to be.  There are times I wonder if I've gone crazy.  But I've spent too much time recovering from unplanned, unexpected, hindsight revealed 'oopses' to believe that it could possibly be just in my head.
Every so often it gets to be too much.  I step outside myself and look at the restrictions through a stranger's eyes and think I'm going too far.  And although I try to rationalize it out, and even talk myself into taking chances,  I find others in a similar situation voicing their own shaken faith in their bodies' reactions to normal, healthy, should-be-safe food.  More often than not, the culprit is quickly and easily identified in the form of an added enrichment, or a new preservative.  Sometimes it requires a little digging...like a cross contaminated batch of almonds (perhaps shipped in the same loading truck as corn?)  How can you dispute unintentional blind trials that end in proof?  Especially when there are multiple people reporting the same experience.  Maybe our methods aren't scientific, but they aren't easy to dismiss either. 
That's what makes social events so hard.  Even water is softened with corn derived citric acid, or the taste is improved by corny minerals, or it's bottled in a corn-based environmentally 'friendly' polymer.  People might overlook the fact that you abstain from cookies.  But if you can't even accept the water they hand you due to allergies...well, the looks are enough to make even the least self conscious of us blush.
Whispers of eating disorders aren't uncommon, or surprising.  Especially now that Orthorexia is the diagnosis du jour.  
For me, as I suspect it is for others, the truth is much more complicated.  There is no self-loathing involved.  I'm tempted to give in, and hang the consequences.  Regardless of caloric content, I'd love to eat that cookie.  Taste the pasta salad, or at least have a few pieces of the fruit plate.  (I'd settle for drinking some of that new-branded water in the cooler)  But in reality, the consequences aren't worth it.  I want to share the meal, but I want to function tomorrow. Whether it's hives, boils or GI malfunction...the reactions are not fun, comfortable, or something to be shared in public.  They also aren't mediated by any part of the brain other than the immune system.  IgE, IgG...the body is attempting to protect itself.  
It's unfortunate that without demonstrating those reactions, it's difficult at best to convince others that they are nonetheless real and valid reasons for food avoidance. 

The trouble with corn is that even when I'm avoiding everything as I should be, there are little, subtle exposures that slip in.  These exposures seem to keep me from fully recovering or ever being 100% reliable.  And the years of damage have affected my daily stamina.  I don't have the energy I should, and it isn't depression...it's malnutrition.  Even if/when I'm eating healthfully, the long term damages are still there.  

With a corn allergy, sometimes it feels like I'm sitting in a box seat.  I'm not entirely alone, thanks to the internet, but I don't exactly fit in with most of the other groups.  Whether it's the food allergy advocates, the Celiac sufferers or the tree-huggers; I have 3/4 of the values in common...but there's still a wall between us made of that eco-friendly kernel, insidious yellow seed, corn. 

A Down Day

5 years ago, I thought that going gluten free and corn free and having that "Celiac Diagnosis" (even if it was by duck theory) would be the end of stomach issues, and dropped balls, and letting the kids down. 
I thought it would fix everything.  I had names, labels...even when I hit a plateau I knew it was so much better than it had been and hoped that eventually, I'd find the slope and get climbing upwards again. 

I'm starting to think I was wrong.  These really are just pieces in the puzzle of my life.  They help, but they don't cure.  There's something, some vital piece still missing. 
Last week I was quickly diagnosed with H Pylori, which might help to explain the slow backslide of the past year.  The treatment is almost as bad as the disease, but I'm hoping after the ten days of antibiotics are over I'll maybe finally snap back to radiant health.  Or, maybe just feel like spending an entire afternoon at the zoo. 
The worst part isn't the nausea, or the cramping and fatigue that's just enough to keep me near bed.  It's my daughter asking if I'm sick, and wanting to stay home "to take care of you!"  It's dropping her off at girl scouts, and apologizing because I really can't stay (Er, but I'm going to run in and use the restroom real quick...)  It's my oldest asking if I'm going to die.  (NO!  It's not the least bit serious, it just makes me need to rest.  It just upsets my tummy.  You can help by getting along with your sister.)  It's trying to face dinnertime with a smile, because they need real food and they need to feel good about real food.  And it's laying in bed, thinking about the dishes I don't feel up to scrubbing, the floor I want to vacuum, the counters that need to be washed down. 
Sometimes I just want to be unreasonable, and throw a fit...insist that they find what's "wrong" and "fix" it.  I've come close to screaming in frustration.  I know, I need to be patient and let each step bring me closer to healing.  But I'm not sure rationalizing it makes the process any easier. 

Halloween Horrors

It's that time of year, again.  My sewing machine has been singing, cloth snippets sprinkle the floor, and everyone checks clothes piles for pins before snatching them off the sofa or lounging over them.  (A nasty habit I discourage, growl about, snap over yet never quite manage to eradicate) 
Costumes have taken shape.  Plans are made to decorate the front yard (although I'm not so sure the cobwebs will make it out...) and the excitement surrounding trick or treating is beginning to build.
School parties are also being planned, and the buzz on all the parenting with food allergy boards centers on the challenge of preparing appealing treats that the kids will enjoy.

Unfortunately, although we've all read and raved over "The Unhealthy Truth", I see that it just hasn't been taken to heart by many.
In the face of adversity...and potential tears or disappointment...the worst in us comes out.  Parents who spring for organic milk, hormone free meat, and all natural juice are stocking their cupboards with vibrant sprinkles, frighteningly neon chewy candies, bright lollipops and other chemical experiments. Favorite ghoul goodies of the year include crispy rice treats, made with marshmallows (corn syrup, blue dye and powdered sugar), crisped rice cereal, margarine and lots of sugar, colored with bottled coloring or decorated with canned frosting (more corn syrup and several preservatives and artificial flavoring compounds) and food coloring gels; clear cups filled with artificially vibrant colors of gelatin decorated to look like monster heads, and of course homemade cookies and cupcakes with monstrous amounts of tinted icing.
These goodies can be made without gluten, or dairy, or nuts.  They are free of the top 8 allergens and sometimes even a few more.  They can delight kids who eat the evil eight on a daily basis, while allowing our own necessarily deprived kids feel like one of the bunch.
It's lonely having allergies that preclude even those decorations.  Although, I'm happy for the excited parents and the smiling recipients.  
Unfortunately, I can't help but wonder what the long term trade off is.
Artificial colors trigger major migraines in my oldest.  Studies show that they cause hyperactive activity in children not diagnosed with ADHD.  They are a neurological stimulant.  And certain ones are linked to cancer in laboratory animals. 
And they don't even have any redeeming nutritional flavor.  And, as petrochemicals derived from coal tar, they're bad for the environment to boot. 

Halloween isn't just a once a year, rare treat excuse for a food fest.  It's the gateway to 3 months full of food related activities.  As we finish off the Trick or Treat leftovers, we'll start in on Friendship Feasts, winter wonderlands, and ending with Valentines.  Then a short break before spring and summer parties.  More sugar, more food coloring to cover the absence of allergens.
As we drift farther into the year away from 'candy day' we tell ourselves that we're cutting back.  But in reality, Halloween is the setback day.  We make an allowance for this one "special day" of sugar and sweet poisons, then we simply spend the next several months making less bad choices, remembering how much junk we sent coursing through our brains and intestines to celebrate the spirits...and congratulate ourselves on comparative restraint.
My kids know that food colorings aren't a special treat.  They'll be not only content, but giddy over a few chocolate bars and some Yummy Earth Lollipops, supplemented with silly bandz. 
Of course, they are blessed with an immediate reaction.  They can look at a confection and weigh it's tantalizing taste with tonight's pain, and although I recognize the maturity involved it breaks my heart to see them struggle.  
Unfortunately, this is the time of year when dye triggered reactions or 'allergies' are the loneliest.  As I bond with other food allergy moms, I'm still the odd man out...but even if I COULD give my kids that stuff, I like to think I wouldn't want to.  I realize that it would be a slippery slope, one I'm glad not to have to navigate. 
Meanwhile, we'll enjoy the finer points of Halloween.  The harvest festivals, the scarecrows and pumpkin carving, the costumes and spooky decorations.  We'll bake cookies, and squash, and put away the air conditioner.  We'll turn on the porch light and sip cocoa.  And the kids will tumble into bed, having survived the toughest food allergy holiday of the year. 

Living the Mixed Kitchen Life

Tonight, I ,anaged to get dinner on the table somewhere around the time that 3 of us were hungry.  It was nothing fancy.  Simply rice pasta (courtesy of Trader Joe's), and a scramble of eggs with carmelized onion and a few greens of varying kinds for those who wanted and could eat them. 
Bumblebee ate early, and was requested next door, where I offered to walk her. 
"Don't poison my dinner," I teasingly warned Penguin and my dear husband. 
Amidst their protests that they love me, would never poison me, did I even have to remind them? I headed out the door with Bumblebee, gave her a kiss, told her when to return and to be good, and returned home. 

Writing the prior paragraph took longer than the entire process. 
However, when I stepped into the kitchen, Penguin was staring at her plate and my husband was at the sink.  My place was empty. 
"What happened?" I queried, trying to see the joke in the matter and thinking that it really looked like my dish in the sink that was being furiously scrubbed. 
Dh turned and gave me the look that I deserved to give him. 
"One thing.  You asked me to do one little thing.  And I couldn't do it!"
"I was only gone two minutes!" I exclaimed, more confused than upset.
"I know!" 
At this point Penguin couldn't help bursting into laughter at the ridiculousness of the situation (and probably scared that her parents were going to start a full fledged fight at the dinner table)  And confessed that they'd poisoned my plate accidentally. 
Apparently he reached across the table to help Penguin pour some sauce, and a small amount splashed onto my plate. 
If we were a normal household, I'd have had a sprinkle of undesired flavoring, and ignored it. 
But with food allergies?  It meant an extra plate and eating tomorrow's leftovers. 
Dh was really upset with himself, but like I told him...better to acknowledge the error and not make me sick (I might have suspected eggs!  Or onion!  Or the cheaper TJ pasta!  Or heaven forbid the handful of chocolate chips I treated myself to after dinner) 
It disturbs us because neither of us like the message we send our kids when a crumb, or a drop, of something unintentional happens to land in an unexpected area.  But, the kids aren't satisfied on a corn free diet, and my husband doesn't really want to restrict his diet that far.  And asking makes me feel bad. 
So, we'll continue to be supervigilant.  I'll try not to lose my temper when accidents happen (I try...And this time there was plenty to eat so I really wasn't upset!)  And he'll have to forgive himself when things do.  The real point is that we need to continue to be aware and avert disaster. 

Emotional Impact

I've now been gluten free for 4 years. And corn free for 6. Active in the food allergy cyber world for a little longer, as I began to delve into the world of food mediated reactions. After all, it takes a lot of courage to admit that something as benign and emotionally charged as food (especially so-called 'health food') could possibly be the root of physical pain. Especially when people are telling you the real problem is located a wee bit above the digestive organs.
In this time, I've seen plenty of other patients come and go along the food avoidance forums. And they all seem to share distinct traits, in shock, indignation, anger and feelings of being overwhelmed. There appears to be a cycle of grief involved in the process of food allergy diagnosis.
To that end, I've put together the following based solely on my observations as someome with no medical training, just a patient who reads and thinks. :-)

They say that there are 7 stages of grief that one must go through whenever they experience a loss. Usually this is discussed in terms of death or divorce. The process is often applied to people who live through disasters, such as fire or severe floods.
Food allergies don't exactly compare to fire, famine, or the loss of a loved one.
But they do constitute a major life change.
When you are diagnosed with food allergies or intolerances past infancy, they become a learning process. Life as you know it has changed, and favorite comfort foods may be lost. There is a grieving process to be gone through.
Few studies have been undertaken to truly study this process. And most professionals are still struggling to separate the emotional complications of medically restricted diets from those of eating disorders. Although the fundamental fear of food is the same, one side has a rational reason and the other (theoretically) has a somewhat irrational fear.
A few publications have dared to publish the deepest, darkest fears of food allergy sufferers. Most stick to the safe surface area. Wow, what do you eat? Wow, how would you survive? And of course, the heartfelt "Hurray, my life is different but it rocks, just the same."
But support groups know the truth. Newbies join online forums and dare to ask, in the safety of anonymity, 'Is this normal?'

Yes.

The stages of grief, as identified by grief counselors are as follows:

1. Shock and Denial. In the world of food allergies, this may mean not wanting to admit that the identified food really is the cause of reactions. Or that the reactions aren't "that bad". Or "Oh, well, at least I can take tomorrow off," and then take a risk. After all they "aren't as bad as some have it..."

2. Pain and Guilt. When the reality of a new style of eating starts to set in, there is a moment (or repeated moments) of panic. We think of pizza, ice cream, coffee creamer, doughnuts and other treats as necessities. How will we live without our favorite comfort foods? What will we do when we "have to" eat out?
For parents, the guilt sets in. What did we do wrong? Surely we should have been able to protect our beloved kids from the pain of exclusion. They deserve a "normal" life. At this stage, we aren't ready to reevaluate the meaning of normal. That process comes with acceptance.

3. Anger and Bargaining. We get angry at ourselves, our doctors, our bodies, even mother nature. Why should we have to suffer? Maybe we make bargains with ourselves. "If we let ourselves/our child cheat just this once, next time we'll be good." The consequences are usually enough to keep that phase from lasting very long. But if allergies are lie threatening, it can be a dangerous phase. And when it overlaps with the denial phase, or different caregivers hit different phases at the same time, it can be dangerous.

Some parents and siblings may also feel anger towards a child whose restrictions make a major impact on family life. While these feelings are normal, they should be short lived and should not cause any backlash against the child. Spouses, likewise, may feel anger towards the afflicted spouse. Again, the feelings are normal, but if they cause any retalliation against the afflicted one, outside help is needed.

4. Depression/loneliness. This phase tends to represent acceptance of the restrictions. It can be overwhelming. This is the phase where a patient, or an allergy patient's family, may withdraw. Its easier. It's safer. It's also when they need the most support.

5. The Upward Turn. At this point, there is some small success. A cake that tastes good, a compliment on some potluck dish, or the end of a successful evening out. I'll list it as separate, although it often is looped with the next two phases, and for many the first 5 appear to be relived repeatedly.

6. Reconstructing and Working Through: Depending on the food restriction,

7. Acceptance and Hope. This phase never ends. Although there will be backsliding, and occasional slips back to stages 3 and 4, on occasion as far as 2 or even back to denial (especially after feeling really well for a long period of time), once one has reached a point of acceptance, reachieving this stage seems easier and quicker each time.


Using and accepting these phases is vital to reaching a healthy balance in living with food restrictions, not just for the person affected by the restriction personally but for their close family members. There are separations and even incidents of divorce when one family member has trouble getting past feelings of denial or anger. Of course, this can increase feelings of guilt (especially for children) and depression or isolation (especially for parents dealing with nontraditional allergies and delayed reactions). A support system is vital.

Symptoms are not caused by stress. And simply eliminating a single offending food or group of foods is not always enough to alleviate all symptoms. There are remaining physical ailments (from digestive damage and malnutrion caused by years of eating the wrong foods) and there will be a variety of emotional stages. Acknowledging the grieving process is part of the road to complete healing. A wide variety of emotional feelings are normal in the course of diagnosis and learning to live with an allergy. And setbacks are normal, too.

Why is it so hard?

I frequent several online communities or bulletin boards specializing in dietary restrictions of some sort. Recently, there have been a few friendly polls asking what we miss the most, what we wish we'd known, how things would have been easier. It left me thinking about the different attitudes portrayed.

Some people are given a diagnosis of food allergies, and they embrace the new lifestyle. They actively seek out alternatives and find themselves determined to meet and beat the challenge. Others fight the change with everything they have, determined to go out kicking. They settle for a few symptoms, and appear angry that doctors can't "cure" this named malady. And others curl up in a closet, limiting their diet to the few foods they'd previously enjoyed that remain free of their allergens. Most fall between the extremes, and many bandy about, depending on their level of grief, acceptance and research.

I couldn't help but wonder what makes the transition so hard, so frightening for some. I look back on my journey and see that I've hit various levels of extreme. I've also thrown caution to the wind, and suffered the cosequences. I've fought, and cried, and been accused of eating disorders until the mere mention of one makes my hackles raise. I've embraced, and experimented, and tried whole heartedly to overcome the obstacles growing in front of me.

But somewhere along the way, I stopped trusting food. It became quite an enemy, something that I fear rather than relish. I can remember walking the aisles of a grocery store and being tempted by new treats and delicacies. I can remember enjoying taste tests and can even empathize with those who claim to "eat their way through Costco" on a sunday afternoon. But no longer. Now, I find a new brand of chocolate chips, and instead of trying them out for a special treat, I save them until there's nothing going on for a few days and nothing urgent for at least a week, just in case they bite back.

I yearn for broccoli, or mayo or salad dressing. I long for a simple quick fix meal that is new, unique. Forget the candy and the baked goods, I want a casserole!

But I don't trust it.

I think that's the hardest thing, the thing I miss the most. I don't trust food anymore. It's supposed to nourish, to sustain us. No one ever said it could bite back, destroy the lining of our small intestines, sprinkle our body with itchy red spots and wreak havoc with our digestive track. Not if you treat it with respect, anyways. Food is supposed to enhance the social experience, drawing people together in a shared caloric pleasure. What you see is supposed to be what you eat, not a variety of re-designed, corn derived pseudo-foods that are supposed to enhance the experience. Fun colors and flavors are supposed to be innocuous, but all those rainbow fish and brilliant gummies I used to treat the kids with put my child in bed, pale, sweating and miserable. And me? I think I'm broken. While I desire the quick, the fast, the easy...while I mourn for the past, I wouldn't trust it if it were offered.

Mother nature, or the FDA, broke that trust a long time ago. And it's a hard road back, filled with the painful reminder of indigestion and more questions than answers. With intolerances, there are no firm lines. And there is no FAAN or other organized group at your back, offering knowledge, studies and expertise. Just the knowledge that you aren't alone, and the grass root support of those who are muddling through alongside of you, just as lost but determined as you are.

What we DO eat

Sometimes it seems as if we get caught up in the complicated labrynth of foods. We focus on what we CAN'T eat. Pizza. Ice cream. Corn chips. Those big chocolate chip cookies from Trader Joes. Frozen dinners. Nothing like a trip to a crowded grocery store to make one wish to wallow in self pity.

It's time to take a moment and count our food blessings.

Top 10 foods that I (and the rest of my family) can eat in moderation without regrets.

10. Baked Apples: And who doesn't like a brown sugar and cinnamon topped baked apple? Just because I rarely get around to making them...well, that just makes them all the more special.

9. Trader Joe's applesauce: No one in my family will actually eat this out of the jar (except on latkes, where applesauce belongs) But, it's corn free. Which means that when I want to bake anything that needs a little extra acid, or fruity flavor, or a touch less fat, I don't have to start by peeling apples to simmer for a homemade version. You can imagine how giddy the storebought variety made me the first time I realized this freedom!

8. Onions: Yeah, I know. Not raw, not by themselves. But just about any dish that begins with a few onions, lightly sauteed in grapeseed oil, makes mouths water. :-)

7. Ginger: Candied ginger to be exact. Baked into muffins, cookies or eaten out of hand, it settles the stomach and satisfies my sweet tooth. (okay, fine, so the kids aren't overly fond of it. But, technically, they can eat it. And I love it.)

6. Peas. Yes, I know, kids are supposed to hate peas. But they're green, I can eat them, and the kids love to smother them in margarine. Once they're on their own plate, that corny junk won't hurt me. I can eat them plain, and they satisfy that "not rice" craving. And it feels good to serve veggies to ALL of us. At one time. With only one pot to wash.

5. Dagoba Chocolate bars: Okay, so different members of the family need to eat different varieties. The point is...it's candy. And it's sinful. And it doesn't hurt (well, it pinches the checkbook a bit)

4. Sweet Potatoes: Roasted or fried, a special treat I'm simply forced to indulge in, since I can't eat prepackaged fries, oven potatoes or even chips.

3. Chebe Bread: The garlic and onion variety is to die for, even if you CAN eat gluten.

2. Tinkyada Spaghetti: Just like real s'getti. But better.

And number one, the best, most wonderful food that we have on our collective plate: Homemade Chocolate Chip cookies. Enjoy Life chocolate chips and ener-G rice flour sure do make up for a lot.

And now I'm off to pre-heat the oven...

Skinny

I'm skinny. I'm slender, thin, twiggy, emaciated.

Other women seem to think the best way to "bond" is to walk up and chat up diet and excercize, to say things like "Oh, I hate women like you. You have so much self control."

Ha. Talk to my husband, who is almost horrified by the amount of chocolate and sweet potatoes I can consume (not together).

And I hate that the corn allergy thing is lumped with my figure. No, I'm not anorexic because there's nothing left to eat. The corn may have played a significant part in causing intestinal damage that prevents me from gaining weight well, the celiac certainly did. But there are foods that I should be able to eat. If it were a matter of allergy, I'd function within the confines of my diet. Corn allergy (etc) certainly complicates things, but there's more. And no one seems to know what it is.

Even more, I worry about raising two girls in a society that places deep value in calorie counts, pounds, and the size on a clothing tag.

People tell me they're so busy between work and parenting they can't find time to "lose weight". People with perfectly acceptable, natural, healthy looking curves tell me this. And I can't find the words to say I wish I had the energy to be that busy.

Maybe we're all crazy...

I'm seeing a disturbing trend on message boards I frequent.

It's laughed about on the Avoiding Corn forum. It's subtly hinted at on Celiac listserves. It's vented over in special diet groups. And it's pondered, rhetorically, in various self-help corners of the world wide web.

"Maybe I'm wrong..."

"I must be crazy..."

"Except, that what I know just doesn't correlate to what I see..." (The words are different, but the gist is the same)

Why do we so easily doubt ourselves when what we witness just doesn't fit in with the world as we believe (or want) it to be?

Parents watch their children melt down after neon-colored cupcakes, candy and medicine...but tell themselves that it has to be...um, the excitement. Right? It's not the additives. Except (They anonymously vent inner doubts online) the child only really loses it when they have artificial coloring. And, well, it sounds crazy...but they've read a few things that made them wonder...It's probably a coincidence, right?

Adults note that certain foods cause bloating, and abdominal discomfort...digestive distress. But it isn't an allergy. It isn't an intolerance...it's, well, it's...um...something else.

People with intolerances start noting reactions and trace them to the "impossible" (like a banana) and tell themselves that they're crazy. Only to learn that their cereal is being recalled for contamination, or the bananas are sprayed with corn ethanol, or that their favorite potato chips now have a healthier oil (that just doesn't agree with that particular consumer.)

People who have Celiac and don't respond quickly to the diet are encouraged to wait it out, their questions about whether it could be something MORE are brushed aside like annoying spiderwebs. But, like those spiderwebs, they return until the problem is dealt with. Or, we learn to deal with symptoms and leave the doctor alone.

Concerned parents recite generic symptoms that doctors brush off, knowing that "chronic" isn't often serious. They play statistics, and statistically...parents stop complaining either because things DO get better or, more likely, they become normal. The warnings on the package say to consult a doctor if the condition doesn't go away. And most doctors run a few labs, shrug, and call it normal. Eventually, it is. Or abnormal becomes normal and we move on, with the suspicion that we're missing a piece of the puzzle.

At what point do we decide that Drs know more about everything than us?

As I tell my daughter, doctors know more about the human body and how to fix it than we do. However...we know our bodies. And it's our job to take care of them, and report problems to the doctor so that he can look for answers.

Unfortunately, it seems that many (if not most) doctors are so bent on brushing off their patients they forget that they can learn from them. Doctors DON'T know it all. They're human. Their skill is found in being a tool, only one tool that we the consumer utilize in our quest for health.

Sometimes, eventually some come back and say that not only were they NOT crazy...they have living, breathing proof (in a healthier body) accompanied by black and white test results that showed they had a physical cause for the "stress" or "over anxiety" (about their kids) all along.

Why did they waste time doubting themselves?

Just as actors are a tool in the art of entertainment, and editors are a tool in the world of publishing; the doctor is one of many tools we the consumer should use in our quest for health.

We need to educate ourselves about the food supply, about our medications and nutritional supplements, our water. We need to question doctors and other authority figures. Why are we taking this course of action? Why are my observances invalid? What makes these concerns invalid? And how many others have you successfully treated? Are any still your patient? (Okay, so I'm not quite brave enough to ask these questions. But they need to be asked.)

We need to question food companies, and pharmaceutical companies. We need to hold them responsible for the truth...and accountable for lies (but not necessarily honest mistakes). And we need to learn to trust ourselves. Another trait that has been victimized from society...sheep are rewarded, the inquisitive left behind or punished. We want to be normal. But I don't think there is a normal anymore.

Maybe there never was.

Food Allergies: Prison? Or Pardon?

This entry, like so many lately, has been inspired by recent goings on in a variety of online communities I take part in.

The subject that inspired me was the frustrated comment that food allergies feel like a prison. I can understand where they're coming from. Indeed, it's frustrating when 'everyone' is going out to eat and you have to find something to bring along, or eat in advance, or just beg off. It's hard to avoid participating in the most fundamental of ice breakers..."Did you try that dip? OMG, it's to die for!" It's lonely to not identify with the curbside "what's new at Starbucks" conversation.

But I don't view food allergies as a prison.

For years, I was in pain. I did my best to ignore it, to push myself out, I put on a smile and bounced about, and laughed like there was no tomorrow. But I had that internal monologue going. "5 more minutes. Just 5 more minutes." I had a route mapped to the bathroom, I was imagining soothing white light coating my abdomen, I begged off citing "headaches" and "menstrual cramps". No one seemed to notice that I always had pms...and if it did come up I joked that I was stuck with "pre, post, present" syndrome. We laughed. Life goes on.

But every moment was just one step in front of another.

My daughter has fond memories of the days before I had "food allergies". When I'd tell her to grab a big pile of books, and we'd snuggle up in bed with the heating pad and read for hours. She remembers building a fort, and me telling her to bring the juice and a cup so I didn't have to leave. She doesn't know that I didn't have the strength to walk to the kitchen. And the memory chills me.

Although I am still dealing with many of the affects of food allergies, I'm also healing. I'm awed by the trips we take, to the zoo, to the library, to the park. Trips that I enjoy. I used to think I enjoyed them, but I hurt. I wasn't really "there". I was in my internal monologue of "5 more minutes, this doesn't hurt that bad." or "Breathe, just keep breathing, slowly, that's right." I love lamaze. I barely used it in labor, but I got a lot of use out of it for other reasons.

Sure, my heart still pauses when I have a meeting I can't miss. I still make sure I can have a quick getaway even though I haven't needed one in awhile. (Okay, okay, okay, I had a few close calls over Christmas. It was a nasty reminder of what life used to be like; and if it weren't for December, I probably would be feeling even less skittish at the moment.) As a good friend once told me "The best way to get over a fear is to jump right in. But, when you jump in and a freak wave knocks you over and tangles you up in seaweed, it just confirms that your fear was well founded. And obviously, it makes it much harder to 'just jump in' again." I'm just recovering from the seaweed memories. It doesn't mean that food allergies create a prison.

As far as I'm concerned, the allergies have set me free. That freedom is a bit scary at times. And of course...I still have physical symptoms that hold me back, and frustrate me. Restaurants are not a relaxing opportunity. Parties are scary. But only because of my memories and fear of embarrassing myself. I can't shake the memory of walking into a career counselors office, forcing a smile and vomiting into his trash can; running in shame. (Maybe I should get that health under control before job hunting?) Or the restaurants. *shivering*.

Now that was isolating. Violent stomach flu striking any moment of any day, several times a month with little warning other than the almost omni-present discomfort; now THAT was a prison. Doctors shaking their heads and telling me to buck up, shrugging, suggesting I relax...just jailors, throwing away another key. Medications that at best, left me sleepy and unsafe to drive? Just empty hope.

Discovering food allergies? It's like being set free after years of prison. Sure, I'm not living the life that TV tells me everyone wants. I may not be an executive anything, or the PTA mom, or a June Cleaver-wannnabe. I'm not a social butterfly, and I've never eaten at the half dozen restaurants I use as landmarks when giving directions. But I have some control over my health. I have hope. Hope! That thing with feathers, that perches on the soul...(Emily Dickinson)

I can bond at the park. I can bond with other parents over the trials of bedtime or their toddlers new cute boots. Everyone can relate to grocery budgeting, whether you buy ingredients or pre-packaged goods. And there's not one of us who doesn't have a pile of laundry calling.

Food allergies may have imprisoned me once, but now that they're labeled and acknowledged, they've set me free. I'm no more imprisoned than an Orhodox Jew, or Seventh Day Adventist. The only prison is in my own memories.

The Tie That's Stressed

When we take our vows, most of us think of them romantically. For better or worse (Insert image of him snoring, or an image of her frantic scrubbing when the in-laws are due.) For richer or poorer (Image of Caroline Ingalls leaving the cushy town life to follow Charles into the Big Woods, the Prairie and so on.) In sickness and in health. (An image of an elderly couple entering a retirement home together).

But very few of us are lucky enough to stay healthy until we're a ripe old age. And for some of us, that "sickness and in health" bit doesn't just refer to the common cold. Nor does it mean anything out of a Nicholas Sparks novel.

When diagnosed with food mediated illness, most people are given a few dietary pointers, a reassuring smile and a few lists to bring with them to the grocery store. They can buy as many cookbooks as they want and there are many support groups out there to help them learn to navigate society with a food restriction. But there aren't many guidebooks that address how devastating a food restriction can be to your relationship.

Your marriage partner signs up to love you despite your faults (and sometimes because of them.) He (or she) is supposed to be the rock that you lean on when you just aren't strong enough to go it alone, and in return, you are supposed to be healthy and strong when they need you most. This give and take is tantamount to any relationship.

So, what happens when one partner suddenly can't hold up their end of the bargain, for an extended period of time? Both partners are frustrated. The dishes don't get washed, the laundry isn't done "right" and a few bills might slip through the cracks. Tension mounts. Eventually, one or the other may get fed up.

It can be especially frustrating when a diagnosis takes a long time coming. Celiac Disease can take 11 years, on average, to diagnose. One study found that half the patients involved had suffered for 28 years from unexplained symptoms and abnormal lab results before finally being properly diagnosed. Although education among doctors is rising, and they are slowly chipping that average down, years upon years of "stress" diagnosis and trips to the hospital (not to mention the innumerable pit stops) wear a person, and a couple, down. The suffering partner may begin to doubt themselves, or distance themselves. They are embarassed at their weakness and their physical symptoms. (No one, and I do mean No One, wants their lover to know how much time the need to spend in the bathroom. Any abdominal attack is a huge romance killer.)

The healthy partner may be frustrated by their own helplessness, and after awhile start to resent their suffering counterpart. After all, most people bounce back after a bout of the flu. So why aren't they? They may harbor secret fears that there's something more sinister about the malady, or they may take the low road and suspect that the real culprit lies somewhere in the head, rather than the gut. Such a diagnosis is devastating to someone who is suffering.

Not only is it miserable to be sick day in and day out, but the one person you should be able to count on, the one person who you can let your hair down in front of and break down in tears of frustration or rage against the latest doctor who shrugged you off is your spouse. And if they suddenly "take sides" against you, then you really start to feel like it might be hopeless.

Then comes the diagnosis. There is elation, for both parties. There is an adjustment period. And for some, that's all there is. Sure, it will take two to prepare dinners and both spouses will need to double check ingredients and be willing to make sacrifices, but there's hope.

Unfortunately, not all couples are able to come together and be made stronger by suffering. And the resultant dietary restrictions (which impact the freedom of eating out, the customary food bonding rituals, the parties and many holiday traditions) make it difficult to find common ground. Most magazine articles dealing with the subject of how to re-connect suggest relaxing with a regular date night. A relaxing dinner out is great for some...but not if your allergies are severe or if you're still learning how to manage them. For dietary-restricted individuals, a restaurant meal can be a nightmare. And it certainly won't bring you closer if you can't relax.

There are numerous counselors who suggest that a spouse spontaneously bring dinner home, another nightmare. Chocolate? Well, if he gets the "wrong one" she might end up crying, and not with happiness.

Dinnertime conversation can be difficult as well. After years of suffering, and then a period of learning, food restrictions may be paramount in your mind or theirs. There is a steep learning curve, and most people share what they are learning and excited about. (Trust me, it's exciting to learn that you aren't "just" stressed.) Sometimes that learning period lasts longer for one spouse or the other.

Parents of food allergic kids have the added stress of trying to balance their approach to the restrictions. One parent may focus on simply keeping the child safe, while the other wants to make sure that they don't "miss out" on life. And sometimes, one parent takes a stronger role in educating themselves in the restriction. There are many cases where a parent of a food allergic child chooses to "fight" the diagnosis, to the child's danger and obviously the detriment of the marriage. Our allergist says he hates being called as a witness in custody disputes, because he doesn't know which parent is right. He can only state in a court of law the same thing he's told both parents in person...avoid the offending substance.

And yet, still there remains little emotional support for those who are dealing with food restrictions, especially food allergies. There are groups such as FAAN and POFAK; but these focus on educating the masses and encouraging the food allergy sufferer to continue to live. Very little effort is put into preserving a relationship.

After all, it's just food. And once you know the problem, you're healed. It sounds easy. And from a simply medical standpoint, it is. Problem identified, treatment initiated. Problem solved.

Well, one problem is solved, but that problem opens the door to several more.

I've known several people who go through a divorce or end a long term relationship and cite their food restrictions as the final straw, if not the trigger. Many healthy partners feel that they didn't "sign up" for dietary changes and restrictions. They have their own pressures in daily life.

They don't seem to see that just because their loved one is suffering doesn't mean that they can't be a sounding board. And they may have spent a long time dreaming about "when things get back to normal". Not only are they needing to adjust to the their partner's new diet, they have to deal with the staunch reality that it will never be "the same". Their dreams need to change, too. They need a mourning period, and unfortunately, they usually feel guilty for it.

I wonder why there aren't more support groups for spouses of food allergic individuals? Or couples counselling designed for couples who are dealing with dietary restrictions. Googling has revealed very little on the subject. Even asking for help just dealing with the emtional aspect of food restrictions reveals that there is not nearly enough known about the psychological aspects of not only imposing self will to protect yourself from well meant peer pressure (Pizza! Ice Cream!) but a prolonged misdiagnosis of "stress" or "eating disorder".

If we really want to help people with food restrictions, we need to address all their needs, and work with the loved ones who are supporting them, too.

Today, I'm simply going to talk out loud.

A friend of mine has two young kids who obviously react to traces of corn. She recently was priviliged to see a top allergist in the country. She was hopeful for answers, guidance, maybe if nothing else...some sort of explanation and if nothing else, some validation. As a parent, its scary to limit your child's diet. Especially without guidance from the medical community.

What she got was a slap in the face.

Those of us who have traced our painful symptoms to specific foods know that IgE allergies are life threatening. And that other "sensitivities" don't necessarily show up on food allergy tests. But we have done research and found studies that link our symptoms with food intolerances, or even allergies. Some of us are lucky enough to have allergists or gastroenterologists who have been around long enough to know that, regardless of current testing standards, some people have negative reactions to food. Foods can cause debillitating symptoms.

But this dr told my friend that her observations are not valid.

Of course...like any good parent, she will not harm her kids simply because the dr tells her to. She won't ignore their rashes and physical pain because this one specialist tells her they aren't really related to what they eat. (Just because it always happens when they eat specific items doesn't mean a thing.)

But this feels like a blow, not just to her but to all of us who find food as a definate trigger for physical symptoms.

This was a top specialist. One that other drs respect. An authority, if you will, on the subject of food allergies. And he doesn't believe in them, unless they kill you.

I don't know about you, the average reader who has stumbled upon my ramblings, but I don't want to die to prove a point. I don't want anyone to have to die, or come anywhere near it, to make the medical "community" say as a whole that food induced reactions are real and valid and need to be addressed. Nor do I want to suffer while waiting for this sudden realization. I'm not crazy about limiting my diet (I don't know anyone who'd choose this for the fun of it) but its a whole lot better to eat a few simple, prepared from scratch foods than it is to require a bottle of pain killers to function on an okay basis.

Regardless of what the gold standard testings have revealed, I don't have atypical rosacea, unresponsive IBS, abdominal pain of unknown origin, possible fybromyalgia, chronic fatigue, "Huh, thats weird," "Just stress," or "How interesting". I have symptoms which are clearly linked to the ingestion of certain foods. I don't know the best way to define these reactions. I'm not sure my doctors do either (though at least they were the ones to diagnose me, and support my belief that corn is the main culprit, they also diagnosed me with celiac disease; another food related illness that does not fall under the title of "allergy" but prior to diagnosis could be suspected as a wheat allergy) But they say allergy is the best description we currently have.

I think that we are in need of a new branch of medical science. A new Doctor with a specialty in food mediated illness. One who can dabble in diabetes, be up to date in celiac research, and be consulted for rashes, GI troubles, asthma and any other symptom that doesn't seem to have a direct cause. Or if the direct cause appears to be food related, but the symptom isn't life threatening. (For that matter...they might specialize in the life threatening reactions as well.)

There are very few studies done beyond anaphylaxis or lactose intolerance. And yet, those studies that are done and are on pubmed such as this one indicate that food can be the culprit of pain and symptoms without being a classic IgE allergy.

We know not to eat what hurts us. But, how do we know whats hurting us? How do we know whats really in the foods we eat? Corn is an eye opener. It can be on waxed fruit, in enriched rice, it can even leach into water from degrading "environmentally friendly" water bottles. What else is out there that is hurting someone and they just can't figure out what it is? Without validation from the medical community, we can't fight for full disclosure. We can't trust doctors and hospitals when we're sick. This post highlights the dangers for corn allergic individuals (although the poster is actually anaphylactic, and requires an epi pen) And what about other allergies? I've heard from numerous people with Celiac disease horror stories of being in a hospital, or donating blood and being in a situation of semi conscioussness when they could remember enough to say "I have celiac disease" and the nurses will say "we know" and hand them crackers. Or toast. Or cookies, to raise their blood sugar. And being dazed, in a position of dependancy, the patient will obligingly nibble...assuming that this is what is needed to get well. Until the cramps set in and pain brings them to the realization that their concerns were being blown off by caring individuals, and that the food they were told to eat "to get better" just poisoned them.

Something more needs to happen. And soon.

Its not just food

I have a food allergy. But some days, it feels like food allergy has me. For some, allergies are simple. Avoid the offending food. There are a few (or a multitude of) safe foods readily available. Once the offending food has been identified, you adjust and go on with your life.

But for me, my "allergy" goes beyond the norm. Avoiding the offending food has given me so much...and showed me how much this "allergy" took away. I never realised how much my life changed. 6 years ago, my symptoms began interfering with my life and the Doctors told me to take some time off, get a maid, relax. I was just completeing a college degree, so I did. Take time off that is. The maid was out of the question. I never dreamed that the few weeks I gave myself would turn into years.

I focused on my daughter, and called my spells stress. I quit going to restaurants because I didn't like racing for the bathroom midmeal (or wishing I could). I had spells at home, too, but they didn't make an impact since I could easily deal with them. I would bring a stack of books to bed and curl up with my kids and a heating pad. I encouraged my husband to go out to dinner with friends, and catch a movie afterwards, because I didn't want him to see me like that. (I playacted pretty well, too, he never really "got" what was wrong.) The movie theatre made me nausous, and gave me hot flashes that I attributed to stress or anxiety. I shopped around my body's symptoms. I dreaded appointments of any kind. I avoided eating when I could, or tried to snack all day. I sought the perfect diet, and said I'd feel better tomorrow.

And then, I cut out corn. Which led to cutting out gluten. I finally understood why someone might schedule dinner before the prom started (besides that masochist theory I held in High School) As I spend more pain free, or at least limited pain days, I find my mind clearing. I realise that walking around the block should not be a daunting task. And that I ought to be able to schedule volunteer time, or a birthday party without worrying what my body will do to me. Its not that I don't want to be there...I just don't want to feel my knees buckle beneath me, or the breath squeezed from my chest because I've pushed myself just a little too far. I especially don't want to reach the end of my limited rope in public. Again. And the fear is very real, based in experience. Its always harder to get over a rational fear than an irrational one.

I find myself frustrated with my physical limitations. I can feel energized and excited, but if I inadvertently pass my limits, I'm immediately reprimanded. Whether its nausea or starting to faint, its not pleasant. Yet, still I'm tempted to press my limits. Tempted, and terrified. Every so often, I still have a corn incident and lose half my progress. Some allergens hide, everywhere.

Whats worse, I find that it wasn't just me thats been affected. My family's been hurt. I avoided family celebrations because I was sick...years in a row. When I make it, now, they're surprised to see me. I tried not to let them see how bad I felt, until I collapsed. And its hard for them to understand why I don't just bounce back. I can't explain it, I don't think I understand it myself.

My husband, and our relationship, has suffered the most. As I look at myself through his eyes, I realize that he felt pushed away. To him, I was active as a mother, as a stay at home parent. Now the kids are growing and he doesn't understand why that energy doesn't switch back to other endeavors, the dreams we held in the beginning.

For me, its not just a food allergy. My way of life is different than the average Americans. My food is cooked mostly from scratch, if I'm running late on dinner, there is no drive through or pizza man to the rescue. Fostering friendships is a challenge, since in our society the "norm" is to go for a cup of coffee, or meet up for lunch. I still dread social eating, though if I'm careful it doesn't attack me.

I don't know if its "just" the physical reactions I have to food, my doctors insist they don't know. But I do know that allergies are not something to be blown off. Whether they require an epi pen to ward off fatal reactions or "just" cause symptoms, food allergies are real. And they impact so much more than what you can eat.