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. 

What I've gained from having a Corn Allergy

When restrictions seem to rule your life, it's hard to keep a positive spin on them.  You go to a party and find yourself turning down delicious dishes, desserts and drinks.  The grocery store is full of off limits food.  You have to call and find out if the school's movie night will be serving popcorn before agreeing to bring your child (or finding someone else to chaperone, so you can continue breathing)
Corn puts specific restraints on life; although it is freeing to know that the rashes and gi symptoms that used to parade as normal aren't something you need to accept and live with the rest of your life, it's also difficult to place restrictions on the air you breathe and the food you consume.
However, when I look back over the past few years since discovering I wasn't suffering from increasingly confusing jumbles of letters that added up to 'just stress', I find that I've learned and gained a lot from living with a corn allergy.
Besides the whole "life really is livable" thing, I think one of the biggest gifts has been learning about our food supply.  It's disturbing, and I'd love to stuff my head back in the sand somedays.  But I've learned a lot about labels and food processing that I otherwise would not have sought out.  I've learned about the plight of small, family farms and a little about political power.  I've discovered that blind trust in earthly matters is generally misplaced.  That's not a bad thing.  It motivates me to feed my family better, to actually make that effort to prepare real meals even if they just consist of organic rice and beans.
I've been forced to re-examine the organic issue.  I've always thought that organic was better, but I didn't really think about why.  Now I know it's much more than a label that I'm concerned about.  Learning about how corn infiltrates our food (thus poisoning my poor digestive tract) led me to an understanding of why there are unknown additions to our food, and why it's so important to support local agriculture.  I've realized that it isn't just organic that I'm looking to support, but foods grown without pesticides or chemicals.  I'm looking for foods that aren't developed in a laboratory. I'm looking for food that is what it looks like, and nothing more.
No compromises.  Everyone says fast food is bad.  But then they get busy and hit the drive through, munching away on those 'paper bag heart attacks'.  I admit, I've fantasized about it myself.  But, with a corn allergy, I can't compromise.  It's poison to me, why would I give it to my kids if it's not even good for them?  Scout night nuggets is not an option, so it's never come up.  I cook.  Maybe not completely from scratch, maybe not gourmet, but still.  It's real food with few preservatives. 
What have I gained from a corn allergy?  A chance to better define my feelings regarding organics and food quality in general.  A better understanding of food politics.  A chance to see how little things that seem insignificant or even wise can really throw a wrench in the bigger picture. 
I have a corn allergy, and it makes me 'that mom'.  A granola mom.  The odd ball out.  But I refuse to do it because I have to.  I'll do it on my terms...I'll define it in ways that make it right for us.  Corn free, naturally. 

Real Food

Recently, struggling to come up with food for Bumblebee, I couldn't help but wonder when we got to this point.  And was immediately assaulted by the memory of sitting in a professionals office, discussing Bumblebee's reluctance to attend school and food issues and being told that she shouldn't be expected to eat the veggies and whole grains I make, since she doesn't have Celiac Disease she deserves "real food".  And an interview with a nutritionist shortly after I was diagnosed with both Celiac Disease and Corn Allergy, tearfully explaining that there was NOTHING I could eat, and the kids needed food too...and being told that I couldn't deprive them of "real food". 
Each time I was on overload, so I nodded, blinked away any tears threatening to fall, and agreed that my limited diet was intolerable for kids. 
But I never thought to step back, narrow my eyes and ask what exactly they considered "Real Food"?  What, exactly, is wrong with a gluten free diet that makes people think of it as "fake" food?  Rice bread isn't any less valid than wheat bread...it just tastes different.  Rice pasta, again, simply has a different texture and taste than 'regular' pasta.  It's not fake.  It's just made from a different grain.
Looking through gluten-free cookbooks always makes me shake my head.  While I am in need of inspiration for nightly meals, I find that specific cookbooks for gluten free foods have a distinct focus on baking.  Breads, cakes, cookies.  Carbs.  Of which we, as a society, get way too many of to begin with.
Real food.  Is it cake?  Pizza?  Macaroni?  And when did it get that way? 
I look at last night's meal (which was a sort of quiche-filling poured over leftover pasta.  Not gourmet, but tasty and chock full of spinach and pepper and onion, as well as protein from eggs)  I wonder what ever possessed me to think that serving cereal or a sandwich to Bumblebee was somehow superior?  A valid choice if she doesn't like the meal, sure.  But more appropriate because it's "real" and has gluten and/or dairy plus corn? 
What's happened to our priorities? 
I'm exaggerating a bit.  I've never really thought a sandwich was "superior" to the rest of the meal.  But there's been that nugget of guilt.  Poor Bumblebee.  Poor Mr. Violets.  They have to put up with fake food, when they could be eating...GLUTEN. 
Well, the guilt is ending (er, well, okay...by ending I mean 'being hidden away and ignored to the best of my ability') right now. 
Tonight's meal is rice and beans with salad.  It's a meal offered on dozens of restaurant menus, and enjoyed by thousands of households in the american continents.  Plural.  There's nothing fake about it, even if I only serve avocado and no cheese or sour cream.  In fact, I believe some would find it even more traditional that way. 
Real food isn't about gluten, or dairy, or any other allergen.  It's about food.  It's about seeing your food, knowing where it came from, and enjoying it.  It's about food that's approachable.  Simple.  Nourishing.  It's the opposite of what you'd pull out of the Star Trek Enterprise holo-replicator mechanism.  It's the good chocolate.  (you know, the only kind I can safely eat that costs a fortune)  It's old fashioned oats or Quinoa flakes.  It's pure cane sugar.  It's water instead of Kool Aid.  It's food that formed on a farm, not in a laboratory, and grew from seeds that weren't GM.  (at least, in my opinion) 
Real food is a recurring theme on allergy boards.  Missing, wishing, dreaming of "real food".  But food without allergens IS real.  It's valid.  It's tasty.  It's nourishing because of what IS in it, not lacking because of what's not. 
And you know what?  In many ways, it CAN be superior to the so called "real" of the Standard American Diet.  Real Food is often gluten free.  Why shouldn't it be? 

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. 

Just one more thing to worry about with allergies

According to a recent study, children with Celiac Disease, like those with any chronic illness, are more at risk for emotional and behavior problems than their peers. 
I don't think it's a huge leap to say any food allergy would work similarly. 
And I can't help but wonder if this is what plays a part in my kid's anxiety issues.  Is it related to trichotillomania?  Or the anxiety driven tantrums? 
I don't know.  But I can't change the way our family's dietary restrictions work without hurting us.  So I can only hope that we can continue to reassure, that the interventions we've chosen are helpful, and that as a society we become more supportive of food restrictions for any reason. 
Why would kids with dietary restrictions be more at risk for emotional problems?  To my way of thinking it's understandable when they are required to go to school, but school personnel and their peers don't always 'get' allergies.  When other parents are busy fighting for their children's right to eat peanut butter, the food allergy kid is hearing "you're ruining things for everyone".  When pizza is served to 19 out of 20 kids and the food allergy child gets to grab their own personal lunch from their backpack, they get the message that they aren't as special as the rest of the class.  They have to put up a wall to remind themselves to say no, to be polite, to be different. 
I don't know what the answer is.  But awareness helps.  And hopefully therapists will learn a bit about food allergy; and the difference between medically restricted diets and eating disorders. 

Is it safe to go allergen free?

There's a new slew of "all in your head" diagnosis coming out.  First up, doctors have supposedly identified an eating disorder known as orthorexia.  Essentially, sufferers believe that certain foods are pure evil and begin to restrict their diet to the point that it is unhealthy and dangerous.
Next up is a spin-off of anorexia.  People with eating disorders begin to blame gluten or other food allergies as the reason that they can't eat what is put before them, or offered at parties, or why they aren't eating at social functions. 

"Whether confirmed as celiac disease through blood tests or self-diagnosed as intolerance...the condition requires treatment by way of a highly restrictive diet. ... it also requires monitoring trace elements of protein present in foods or its preparation becomes necessary lest upset stomachs, painful GI tracts or other debilitating symptoms strike." (emphasis mine)

In the article I site above, this paragraph disturbs me even more than this upsetting practice.  Because it indicates that even if one has a documented, medically rational reason for complete and total avoidance...the worst that can happen is a stomach ache (the word debilitating is in there, but I doubt most people really comprehend how debilitating physical GI symptoms can feel)  The truth is that with the (albeit relatively rare) true IgE food allergies, which are NOT limited to the top 8, even a small crumb can cause anaphylaxis.  If a peanut falls on the salad, and the cook immediately fishes it out and sends the salad out to a nut allergic individual, their throat can swell shut before the rest of the party is done commenting on how delicious the first course looks.
If someone with celiac accepts a plate with toast on it, and simply removes the toast and brushes off the crumbs...not only will they suffer from debilitating stomach issues for a few days, their intestines will sustain physical damage that can be viewed and verified by endoscopy.  This damage leads to malnutrition, along with a host of other related problems and, worst case scenario, even cancer.
I don't doubt that there are some people who are afraid of food for unhealthy reasons.  Nor do I doubt that there are people with unhealthy obsessions about food, or avoiding too many foods.  But is the best way to address that fear to label restrictive eating as a psychiatric disorder?  Or is it to do more research?
I firmly believe that most people seeking a restrictive diet are motivated by physical symptoms.  Maybe they have an intolerance or allergy.  Maybe their bodies are just fed up with soda and fried foods.  Maybe they just need a little help balancing nutrition.  Regardless, identifying the motivation should be the first step.  And then rule out causes.
And if an individual is adament about avoiding foods, then it seems likely that they may not need to reintroduce those foods.  Instead, therapy or medical support should focus on identifying what one *can* eat.  And instituting a balanced diet.  So many people these days do not know how to cook, or find vegetables...or what to do with them when they do, that if they decide to give up gluten and nightshades they feel like they're stuck with white rice and carrots.  There are a host of little known veggies out there...and others that are just scary looking.
Maybe the orthorexic would be more adventurous if they learned how to prepare and eat an artichoke, a salad, their own dressing or sauces.  Those with anorexia and other eating disorders obviously do need counseling toward reaching a healthy body image.  But it might be easier if any digestive problems (like bloating, which can make a teenager feel inexplicably "fat") were addressed at the same time. 
At any rate, when someone has a valid reason for total avoidance, their choices need to be respected.  And they will be less likely to obsess over their food choices if they weren't concerned with mental health labels.  At least in the long run.  It seems reasonable and healthy to me for someone newly diagnosed to spend a little time obsessing about food, since they quite likely have been told to drastically change their way of looking at food.
As someone with a unique allergy, I don't want to be blown off and made sick or worse because of a 'trend' in 'it's all in your head' diagnoses.  As the mother of a food allergy sufferer, I don't want her labeled as eating disordered just because a few of her peers use the word 'allergy' inappropriately.  I see her eat a wide variety of fruits, veggies, carbs and protein every day.  What we don't eat doesn't matter nearly as much as what we DO eat.  And I sincerely hope the medical practitioners diagnosing these conditions, as well as the laymen labeling them, acknowledge the difference.  

Parenting and Holland

Like most people, I had a vague idea of what sort of parent I hoped to be.  I formed an image in my mind of our family, of how I would handle different situations.
When I got pregnant sooner than anticipated, I knew that those images were changing, just by virtue of the situation.  I continued to form ideas, but I kept them vague.  General.
I quickly learned that the only way to parent my wayward babies with my wavering health was to take things as they came, without judgment.

I like the Holland metaphor.
Some days, I feel as if I've embarked on a journey.  I embraced the excitement.  I packed a small bag of just the essentials (patience, respect, and creativity) and set out.  I said "I'm going to Italy!"  I was so excited, I only glanced at the guidebooks.  I didn't bother to learn the language, I just accepted that I'd learn as I went.

I climbed on the train and looked out the window.  I saw tulips.  I bought quaint little clogs.  I gushed over the waterfront and windmills. I explored the shops, learning to speak Dutch through immersion.  But somewhere along the way, as I contact friends to tell them of my experiences in "Italy", I started to suspect that it wasn't Italy.  It's only in retrospect that I was given a label for the things I've observed, experienced.
And it's not Italy.
Maybe it's vacation.  It's a voyage, an adventure.  But there's no gelato, or Venice, Rome, Florence.  And there's no Colosseum hiding around the bend .
And in retrospect, I see that the times I traversed flooding railway tracks were not necessarily "normal" inconveniences.  But at the time, they were a problem...and I simply pressed through the best I could.  I've reassessed my expectations of this adventure.  But, I'm no longer certain it's Italy. 

I'm not sure if the labels I find will ever work.  After all, I still had the time of my life, and there's no going back.  No matter what I do, there will be no Colosseum, no Italian vineyards to explore.  Even if I were to miraculously manage a transfer, I'd be comparing the two visits and wondering what I was missing from the trip I first embarked on. 

I didn't really realize that there was anything all that out of the ordinary until I started hearing others gush about their Italian vacations and realized that my experience, while valid and wonderful, just doesn't quite compare.  It doesn't mean I don't enjoy my journey.  I do.  But this is where a label comes in handy.
When I complain about the pea soup, or mention the coffee hour, if I knew I was in Holland a lightbulb would go on.  But if I'm talking of Italy, the image just doesn't jive with the pasta and gelato they experienced. When I talk about the quaint cottages I stayed at, and they recall brick vineyards...well, it's hard to relate. 

We didn't all visit Italy.  I was in Holland, but I don't know the word for it, even though I learned to communicate with the people I met. 

Just like this fictional vacation; I'm raising my kids with limited labels.  I have a few...I know Penguin's a trichotillomaniac with ADD tendencies and Bumblebee...well; I know there is a label for her.  But I still don't know what it is, or if it's worth pursuing.

And then there's the food. 

The food is kind of like that elusive Colosseum.  I had a vague idea of my plans, an image of what I wanted to see.  I keep thinking it's just around the corner.  And then I remember I'm not in Italy.  And there is no Colosseum here.  But there are beautiful flowers, lovely people, and amazing views.  I'll always wonder about that Colosseum.  But I wouldn't trade these views for the Roman Empire. 

Corn Allergy

The thing about a corn allergy is that sometimes it;s not just socially isolating, it feels like a downright punishment. 
It's bad enough that you can't just go out to eat with friends, or try out a new restaurant, or stop for coffee and a muffin if you're caught in traffic on a long commute. 
A simple headache remedy costs a fortune, and you have to jump through hoops of red tape before you are given the privilege of paying it.  But the worst is going to the doctor. 
You're sick, with some complaint or another that simply doesn't improve on it's own.  You need medical advice, and probably medical treatment.  And you're tired, worn down from your ailment. 
However, you need to remind your dr that those latex gloves could be dusted with cornstarch.  Women need to bear in mind that the lubricant used during an internal exam is probably corny.  (and generally just put up with the itch of a topical one-time exposure)  And then you get to the prescription. 
"Is there corn in that?"
You get The Look.  Stifled laughter, poker face.  Why would there be corn in medication?  Corn is a vegetable.  It grows in fields, it's easy to spot on the dinner table. 
"There are often corn derivatives used in the excipients of medication." 
This gets a little better reaction, at least it sounds as if you know what you're talking about.  There's hemming, and hawing, shuffling papers or clicking of a computer mouse. 
"Dextrose, microcrystalline cellulose, xanthan gum..." 
At some point, you're told to talk tot he pharmacist, who blinks, and tells you to talk to your dr. 
Eventually, you either get an answer and start the "What are my other options" routine. 
Ideally, since you're not feeling well, the dr and pharmacist would be proactive in helping you track down a brand name of a medication that will work for your condition and is safe.  But more often than not, they leave you to do the legwork. Once you've exhausted all other avenues, you get to explore the world of compounding. 
I find that doctors are reluctant to write a prescription for compounded medication.  They prefer prefabricated pills, probably because the strength is guaranteed and they don't have to think about dosage or scheduling or anything like that.  With the pre-prepared prescriptions and over the counter medications, there are also pre-prepared instructions.  They fit into a neat little niche in your chart.  Compounding confuses things. 
Eventually, you usually get what you need and it only costs a small fortune.  :P  Or, if you don't *really* need it, you give up and save a small fortune. 
And then there are medical procedures and tests.  Some require contrast dyes and other niceties that just don't come with handy ingredient labels.  And the personnel don't have time to argue with you or track down answers.  So you either play a squeaky wheel, or give up and play the martyr.  It's only a few days/weeks of reactions, and the benefits outweigh the discomfort. 
Or there are tests where they say "If it's too uncomfortable we can always give you something." 
Except...with a corn allergy, you need to prepare for that scenario and have something safe available.  Which is expensive if you end up not needing it, and stressful even if you do. 
So you suck it up and just deal.  Cavities, biopsies, freeze off a mole.  Things no one likes to do.  As a human being, you suck it up and deal because you know that the end result is worth the discomfort.
But with a corn allergy, you quake inside because you know that if something goes wrong, they'll make you a whole lot more miserable the more they try to fix it.  And you have a very limited number of options to minimize the discomfort to begin with. 
It's no wonder they tell us it's just stress.  The miracle is that we don't all turn gray the first year after diagnosis! 

Missing the holiday spirit...

Last night, as I lay in bed trying to discern the reason I'm not quite into the holidays this year, it came to me.  Although, I've felt worse some years...and been mid diagnosis some years...I've fought hard to get out,  get baking, to grasp the little things and play them up.  This year, we have our gifts together and the tree up, the elf is finding new spots to hide, the kids are giddy with excitement...and yet the baking isn't even done yet.
Every time I think of it, the nausea is still too much.
And I feel down.  Really down.
As I lamented to my husband the lack of excitement, and that all I really want to do is curl up and enjoy the days with him and the girls, it occurred to me that my lack of social graces is mostly inspired by...shame.  After 10 years...I have a diagnosis.  I'm intolerant of or allergic to corn.  I have Celiac Disease.  And the two conditions have triggered multiple other identified intolerances.  I've just been treated for H pylori.
I should feel great, right?
I'm exhausted.  I'm sleeping more often than a 3 month old.  My abdominal region feels crushed, bruised.  I'm desperately trying to eat enough to keep the scale from dipping under 90 lbs.  And at my last dr appt, the dr flitted her eyes around the room, then shrugged and buried her nose in the notepad in front of her, not even writing...just tapping. 
That tapping, the not meeting my eyes, the little frown...the shrug and release to a dr I've never met who can't see me for a month...not reassuring.  There's a diagnosis missing. 

In the past, by Christmas, I've been optimistic.  I've thought I had the answers I needed, and believed I was on the mend.  I could answer questions positively and clearly, or simply evade them by pretending I wasn't that bad.  This year, I'm lighter than I've been in at least 5 years.  I can't stop bleeding, and I'm not buying perimenopause 'nothing to worry about, just be patient'.  The nausea and cramping are really bringing me down.  I'm not playing poor me...I'm trying to simply state the facts.
I'm also worried about my daughter who has developed trichotillomania, or the urge to pluck out her eyelashes methodically.  I know this is the right diagnosis, although so far my attempts to get her help have not really led anywhere other than "Tell her to stop!"  Which, of course, I've tried.  :P
While I love hanging out with family, and I would love to have a get together, or attend one, I've felt up to either for a full...oh, five?  Fifteen?  minutes at a time over the course of the past 3 months.  I'm really hesitant to make plans because of how bad it makes me feel to leave early or change my mind last minute.  I'm haunted by memories of discomfort and reactions.  I'm withdrawing from questions because I have no answers.  And I'm avoiding...because I'm finding that after years of this whole sick-at-the-last-minute business, even those I love are starting to think I'm choosing others first.  When the truth is, I'm embarrassed that I'm still sick, that my stomach is threatening (and I'm now aware that I'm the only one fighting to keep her digestion under control), that I don't have answers and am starting to give up finding any.
(I didn't say that I'm giving up.  I'm saying that I'm starting to give up hope of finding answers.  There's a huge difference, as I found myself trying to explain to my husband.)

In past years, I've daydreamed about hosting parties.  I've enjoyed getting together, if only for an hour, with loved ones and family.  I've told myself that this will happen, someday, when I'm better.
This year, I'm not so sure. 
My goals for the new year are to get the house clean again, to get food under control, to get help from the medical community.
Humble enterprises.
I thought by now I'd be farther in my journey.  It's hard to admit to myself that what I thought was the bigger picture is only a few puzzle pieces.  And I'm wondering if the missing diagnosis could possibly explain both the food reactions and the menstrual irregularities. 
I suppose you could say that I don't want to ruin anyone else's holiday with my own frustration and shrugged shoulders.  I'm disappointed that the answers gained over the past few years simply aren't quite good enough, and I'm ashamed of where my limitations have led me, and uncertain what lies ahead.
 So this year, while I'm thinking of family and friends...I'm going to be happy that they are celebrating.  I'm sending best wishes.  And I'm hoping that they understand why I'm playing the Christmas Card friend (which reminds me...I never did get Christmas cards mailed...make that a 'New Years card friend') instead of a hostess.  I'm going to focus on what I am up to instead of worrying about appearances and what I'm not up to. 
And I'm going to try really hard not to feel guilty about it.  It's the holidays, and even if I'm still climbing my way back up from my last reaction and the bout with H Pylori, and still seeking answers, I'm going to salvage what I can...even if it means sacrificing what I wish I were doing.  I'm going to enjoy Christmas, regardless of the social aspect...or lack thereof.  And in the new year, I will find healing, and strength.  And maybe we can get together 'just because', and celebrate friendships and family without the stress of holidays as an excuse. 
If there are other readers struggling to find missing pieces and feeling discouraged, I just wanted to let you know you're not alone.  Let's band together online, and embrace our strengths...accept our weaknesses...and just enjoy the day. 
Happy Holidays. 

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. 

There is nothing in our society more emotional than the subject of food.  Just ask any mother to be...the battle between breast and bottle usurps more conversations and internet boards than any other newborn topic.  Then there is the question of when to introduce solids (You're a bad mom if you intro too early.  An even worse one if you starve your poor darling by introducing 'too late'.  And the standards keep changing.)  Then there are religious dietary restrictions.  Health nuts.  Food allergies.  Food intolerances.  Behavior disorders responding to dietary intervention.  Pesticides, salicylates, MSG, preservatives, sugar and transfats.
However...although many of these may bring about a spike in blood pressure, or a bona fide shouting match...the most explosive issue in PTA meetings across America can be the issue surrounding a simple Peanut Butter sandwich.
It's simple.  It's easy.  It's tasty.  It's deadly to a select few.
And that's what adults can't even wrap their brains around.
It scares me to think what kids can do.  That even at their most malicious, the elementary school kids who pick up on their parents' annoyance with a potential peanut butter ban or their classmates obvious avoidance of anything peanut related, won't realize the potential cost of exposure.  They may think they're being funny by shoving a granola bar under an allergy sufferer's nose, or smearing peanut butter on someone's arm.  They may know it's mean.  But teasing, in their brains, is designed to demonstrate the futility of an irrational fear.  There's no room in their for the possibility that a fear of food could possibly be rational.
What really scares me are the potential consequences.  Not just for the victim, but the attacker.
Imagine that you're 8 years old.  You hate pink.  You passionately hate pink.  Your friend's favorite color is pink, and she happens to wear a pink baseball cap to school one day.  "Wear it!" she says, and you shake your head.
This evolves into a battle of wills, and at some point she jumps up and pops it on your head...you brush it off, glare at her, the teacher tells you both to knock it off, she giggles uncomfortably and you later make up.
Now imagine you're the "bully" with the pink cap.  And your friend says she doesn't want to wear it.  After insisting that it's pretty, it'll look nice, it won't clash with her iron-red hair, you pop it on her head...and she knocks it off, falls down and starts gasping for breath.  An ambulance arrives and she's rushed to the hospital, unconscious.
Obviously, you're at fault for forcing the cap over her head.  You knew she didn't like pink, didn't want to wear the cap, and you refused to accept her wishes.  But you didn't comprehend that putting a cap on her head could kill her.
It's the same thing with food allergies.  For the vast majority of kids, food is simply an aesthetic experience.  They may not like certain textures or temperatures, or flavors.  But they express their unique opinions and that's that.  Most adults experience childhood opinions simply as an extension of their sense of selves...kids express opinions and in their limited lifespan sense that whether they get a red or green lollipop is a matter of life and death; they want to live...they want a red one like their best friend or they'll be doomed to dorky green forever.  (This is what spawned the infamous "Get what you get and don't throw a fit" saying)
Unfortunately, food allergic kids get lumped in the same category as the doomed dorks...the ones who are picky, won't eat crusts or colors or soggy crackers.  The ones who recoil from plantlike objects on their plate.

It's a hard situation.  No one can fault the tuna fish lover for sticking their tongue out at the picky eater or waving their odorous sandwich under the nose of someone who's pretending to gag.  As long as both parties are having relative fun, it's relatively harmless.
But what about a kid who is fearful of peanut butter sandwiches...because they have an epi pen sequestered in their belt?  Or because they've recently tested positive for peanuts as an allergen and their parents are in the process of ascertaining how serious the allergy is?  Their fear is real, based on symptomatic consequences, not aesthetics.
How is a yard duty to know the difference between one kid screaming "No, keep that sandwich away!" because it's gross and they make people laugh by reacting, and another screaming "No, keep it away" out of real fear?  The fact is they can't.  At this point in time, the severity and far reaching implications of food allergy are just too abstract for most people.   
Food allergies shouldn't relegate a kid to a lifelong bubble.  A child with food restrictions is still a child, first and foremost.  They deserve to live life to the fullest of their ability, and even the ADA protects that right.  
Which is why the new trend of Food Bullies is so disturbing.  Neither the bully nor the victim are sure how to define it.  Even witnesses might not process, immediately, the dangers of what's going on.  But, it impacts a child's sense of safety.  It threatens certain children's safety, and perhaps their lives. 
My kids are lucky.  If faced with a food bully, they will be annoyed.  Frustrated, their feelings possibly hurt.  Penguin assures me that the worst bullies she sees are substitute teachers, who tell her that milk is important and she will get very sick if she keeps refusing to drink it.  I'm not sure if this makes me pleased, or sad.  Since the behavior is obviously judgemental, but not necessarily bullying.  And there's not much I can do (other than calling the office each time it happens to express my displeasure.  Which I do.  I don't think it's happened in awhile, it's just made a deep impact.)  Anyways...my kids will survive food bullies.
But not every parent can literally say the same.
Not every bully is intentional, and that thought is just as scary.
I will continue to teach my kids the importance of tolerance, and accepting that something specific might be important to one person for reasons that we simply can't comprehend but should respect.  

The Kernel of Fear

For about a year now, we've had a leaky bathtub faucet.  I've been assailed by guilt whenever the radio reminds me to turn off the tap while flossing, reprimanded by my kids for wasting water while waiting for it to heat and lain awake listening to the drip-drip-drip.
It's not that I didn't want to repair it.  As soon as I realized it couldn't flip all the way off, I got on the phone and the landlord sent a plumber out.
Unfortunately...he couldn't twist the faucet off the wall because it had rusted together with the pipes behind the wall.  "No problem," I was assured, "We just go in from behind.  It'll take a day, two at the most." 
Well...behind that wall was a massive china cabinet, with every piece of china and breakable knick-knack that I had any desire of keeping intact.  In the interest of protecting those breakables, the whole thing had been tightly bolted to the wall.  Which would take a day or two to reposition by itself.
I'll admit, I hid behind this feat for much longer than necessary.

Why?

The fear of corn.
You see, in order to get to the pipes, they needed to slice through the wall.  When they were through, they needed to replaster the wall, patching up the drywall.  And there's corn in that. 
Cornstarch makes a handy adhesive that doesn't appeal to bugs.  (Hm, I wonder why?  Maybe they instinctively suspect that it's dangerous?)  Interestingly enough, I've heard that there's wheat starch in some drywall compounds, too.  Of course, gypsum is the main ingredient.  But there's corn, too.
And where there's corn, there's pain.
They'd be filling my house with cornstarch, turning off my water, and taking over the bathroom.  While I hung out, smiling politely and asking if there was anything I could do to help besides stay out of the way. 

Knowing my reactions to corn, this just built the dread.  And the longer it's gone on, the bigger the tower of dread.  I huddled in the shadow of it, thinking.  I hate missing events.  I was too sick to go to the science fair last year.  I was miserable through at least one concert, and passed out on my husband's shoulder when a woman wearing too much ethyl-based perfume sat down next to me at a concert.  I bloat up to a 5 month pregnant belly just walking past the kettle corn booth.  And let's not talk about what happens when food hits the irritated areas of my intestines.  We'll leave it at, I want to be home alone for that.  I was home alone for that the first time the landlord called to schedule things.  I leaned my forehead against the cool ceramic side of the bathtub, listened to the "drip, drip, drip" of the faucet, and immediately decided I didn't care.  I pleaded stomach flu, and put off rescheduling for um...well...yes, a whole year. 

Home is my refuge.  My safe space.  My bubble.
I let certain things in, take calculated risks.  But...we make sure they aren't airborne risks.
Sawing through drywall would create airborne corn.  To settle on the counters.  The table.  The pots and pans hanging on the wall. 

Now, I try not to let corn dictate my life any more than it already needs to by virtue of it's presence.  But...this...This was different.  It meant a lot more invasion.  It meant nowhere to hide for an indeterminable amount of time.

I'm glad to say that we finally dealt with it.  Our kind landlord found a lovely, no frills gentleman who looked at the job that I was assured would take nothing less than a full days work, assuming nothing went wrong once they got into the wall, simply nodded and said he could do it.  He didn't elaborate.  He arrived at noon.  I hid in my room as I heard the sawing commence immediately.  Not long afterward, the faucet clanged into the bathtub (Which is just outside the door to my room).  After about 3 hours, he was spackling up the patch on the wall.  And we opted not to paint, since that area is generally covered by a piece of furniture anyways.

I've been corned.  But not as badly as it could have been.  Not nearly as badly as my nightmares warned me.  The worst part is actually the discomfiture I feel inside.  The massive emotional reaction I've had to the whole incident.  The dread, the memories of whispering responses through cramps as I try to smile politely.  The fear of being mid-reaction when he showed up. (It would just be embarrassing.  I know, I know.  Grow up and deal with it.  But...) I lived through similar experiences just fine.  So why do they haunt rather than reassure?  How could I have let this go on for a year because of a simple fear?  (There were plenty of other things to focus on, so it's not like the tub was the only thing on my mind for the past 365 days, but still.  You'd think I'd have acted sooner.) 

I can't really justify, only acknowledge that corn in particular can wreak havoc with your emotions.  It makes a person feel paranoid.  Seeking bananas or eggs from a "safe" source can make you feel like you have OCD.  Taking great pains to keep the corn free dishes isolated from a few drips of citric acid enhanced tomato sauce or even a few crumbs of enriched flour, doesn't improve that image much.  And I don't know about others, but when I take a step back, my precautions always seem ludicrous.  But when I let go and try to act normal...I get sick.
Not just "Ugh, that didn't sit right.  Hopefully I'll be in for lunch" kind of sick, but an ongoing, slow recovery, frequent backsliding kind of sick. 
After a few brushes with trust and food, or just breathing, it seems relatively fair to be paranoid.  
It's enough to make you crazy.  But, as this incident has reminded me, even when grounded in cold hard truth...fear can't dictate your life. 

Holidays, food and allergies

It's that time of year again. The dreaded, *ahem* I mean Much Anticipated holidays. Complete with holiday parties, potlucks, cookie exchanges, and other winter celebrations.

Every one of them seem to involve food.

And again, support boards are filling with questions. They run along the lines of "I want to make this particular kind of recipe for my child's class/neighbor/church group. But, we have a very strict no (insert allergen list here) because so and so has a severe allergy. I really want to include so and so. Will this be safe?" Sometimes there are addendums about overprotective parents. Sometimes there are addendums about being knowledgeable because of personal experience. But it all boils down to the exact same firm answer.

Maybe.

First things first: Don't assume that someone is overprotective or overcautious. Only the intolerant individual (or their parents) really know the extent of their personal risk. And if you've ever seen an anaphylactic reaction, especially in a young child, you will do anything at all to prevent it. (From banning peanut butter to chopping down walnut orchards.) Worst case scenario in the case of anaphylactic allergies really is death. It may not be likely to happen, but it certainly spoils the holidays for the unlucky few. And for those who simply experience food "intolerances", shall we say that some believe in fates worse than death and leave it at that? Their holidays might not be much fun even if they DO survive buttered muffin tins.

The point I'm trying to make is that even if you do go the extra mile to ensure that your food offering is safe, accept the possibility that the recipient will still politely decline it. After all, they are the ones who will deal with any consequences.

The less severe the potential reaction is, the more likely a person is to risk "other people's food". Especially in classrooms. (everyone wants to feed kids sugary treats.) And the younger the kids, the more important the difference is.

Before going the extra mile, it's important to know how "allergic" the potential reactor is. There are 3 general levels of food avoiders. Level 1...Will break out in hives and need benedryl if someone opens a jar of peanut butter in the same building. (Okay, I'm exaggerating. A lot. But Level 1 has a severe allergy, and will not be allowed to eat your cookies no matter how safe you think your kitchen is. Mom will need to actually supervise any food prep. Bring fruit if you really want them to be safe, unless they're anaphylactic to it, too.) Level 2 has an allergy, may carry an epi, but can tolerate low levels of cross contamination. This means they might eat a box of crackers that carries the statement "Made in a facility that also processes: XYZ" but can't eat a cracker off the same platter that has cheese slices on it, even if the cheese slices aren't touching. Level 3 is the tricky gray area of intolerance and potential allergens. Usually these parents have been advised to avoid the offending foods for a variety of reasons, and left to decide how cautious they need to be. Some will make exceptions for special occasions and deal with the ensuing reactions. Others will be super vigilant. Most will permit food that doesn't contain the allergen (or obviously contain the allergen)

The best thing you can do is talk to the parent or the sufferer ahead of time. Ask what their comfort zone is, and see if you both are comfortable accomodating their needs. Of course, this isn't always feasible, and sometimes you get vague answers. Hopefully the vague answers will lead you to an approximate reaction level (1, 2 or 3) and you can proceed with the following in mind.

For a level 1 reactor, make sure to avoid their allergen in the actual food product, bring recipe or product labels just in case, but make your peace wit the fact that the kid in question probably will skip it. Your part is to avoid putting them in the hospital just by being in the same room.

For a level 2 reactor, start with safe ingredients (preferably from a new package, since it's easy to cross things like flour and sugar by using the same measuring cup) And make sure your tools are all doubly clean. Avoid wooden spoons, which have deep crevices that may not grow bacteria but certainly make good hiding places for allergenic substances. Keep all of the potential allergens covered and put away during the prep process. (In other words, don't let your husband scramble eggs while you're carefully preparing eggless cupcake mix. The chances of cross contamination are slight, but they disappear when the eggs stay in their shell.) Think out each step of the process. It won't do to grease the pans with an allergen after you've carefully avoided it. Consider decorations, too. Powdered sugar can have wheat or cornstarch. Sprinkles, chocolate chips, frosting...all have potential red flags. Bring ingredient lists with you. Cut them out or take a picture with your phone/digital camera just in case there are questions later.

For a level 3 reactor...you can relax. Read ingredients. Bring labels if you can, and try to remember brand names. But don't gnaw your nails off worrying about the cup of milk your son was sipping as he watched you whip up those top 8 free brownies. Knowing your kitchen isn't allergy friendly, but that the brownies are (and having the ingredient list) is all the level 3 person needs to make a decision. (I wish we were all level 3's)

Of course, the best thing you can do for allergy families is take the focus off of food. Bring stickers, boxes of crayons, or junk jewelry. Or jump on the healthy food bandwagon and look for healthy alternatives. Fruit skewers, veggie platters, meat and cheese platters will all help to avoid the mystery ingredient issues and they lower everyone's stress levels. No one worries if veggie trays will crumble without the egg, if fruit skewers will taste wrong without real butter, or if the crackers will fall in the middle. There's also the benefit of having "real" food available. Most kids are too excited to eat before parties...but will happily devour anything that ends up on their plate and looks appealing. Even if it's healthy. And when you've had 4 other class parties in the past week, anything that isn't covered in frosting will appeal to all the parents.

Everyone wants their goodies to get rave reviews. Everyone wants to be "That Mom". They want to provide the eye popping experience, the awesome dish that gets raved about for weeks to come. But food really does add stress to the lives of allergy sufferers in ways that "normal" people can't imagine. Kids have to be trusted to have willpower beyond their ears. Adults have to walk a fine line between precaution and courtesy. And everyone wants to sit back and enjoy the holidays.

So if you really want to do something nice for someone with allergies...relax. Make your favorite signature dish, taking reasonable precautions. Give details of the ingredients in minute detail. (Even cooking spray has potential allergens) And then turn a blind eye to those who choose not to partake. They aren't trying to spite you. And they are just trying to enjoy the holidays as much as you.

Maybe it would help if we think of it this way. Allergy sufferers aren't just trying to avoid a nasty reaction. They're also protecting the baker from the guilt of causing one, and the other guests from witnessing it.

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.

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.

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.