Thursday, December 25, 2008

I want to take a moment to thank everyone for their support. I'm still dealing with a reaction, and some lingering depression; but I know that it's going to be short lived. (Okay, so I don't know. But I really, really hope it is...) And that helps.

Now, for the actual blog entry. The reason I've decided to leave my earlier ramble up is so that I can refer back to it; also so that others who deal with reactions can possibly relate. Any kind of GI trouble is so socially taboo that it feels isolating, it's not something we talk about. And when we feel better; we try not to think about it. Don't know about you, but I try really hard not to relive moments of physical pain.

Through the e-mails and message boards I frequent, I've been given a lot to consider regarding the relationship between depression and reactions; though I'm not a doctor and I haven't put it all together yet I'd like to start listing it here. I'm not writing at my best, so you'll have to bear with me.

First, and foremost, it's depressing not to feel well. It's even more frustrating when you feel as if you go above and beyond to isolate yourself, to be "different" and still you end up getting sick. Why not give in, live cheap and easy? You're just going to get sick anyways.

This is an "in-your-head" type reaction, but it's human and a valid response. I'm past the isolation, mostly. While I miss the idea of restaurants, I don't miss eating out because I did make the connection that they "hurt" me. And I think that a daily grind would drain me, even if it didn't make me collapse. But it is depressing to spend twice as much on food than a "normal" variation and then have trouble keeping it down.

On the physical level, it's worth noting that the gut is responsible for the production of seratonin. Seratonin is a hormone that affects mood. Most antidepressants work by increasing seratonin levels in the body.

GI reactions cause inflammation in the lining of the gut. In the case of celiac disease, actual physical damage is caused when the immune system kicks in and attacks the lining of the small intestine. Theoretically, this damage could (and would) affect the production of seratonin. Lowered levels of seratonin=depression.

Also of note, researchers recently found that people who are under a lot of stress at the onslaught of a reaction typically have longer or re-curring symptoms which do not respond effectively to medication (antihistamines). These reactions may be caused by increased levels of cytokines like IL-6 or stress hormones called catecholamines. This study was limited to participants experiencing typical environmental allergies---runny nose, watery eyes etc. However, since mild food allergies are treated with anti-histamines as well, one would think the theory should cross into the realm of food allergies.

This supports the frustrating fact that I, at least, find myself reacting worst when it's least convenient. (Like I volunteered to do yard duty or drive the carpool.) The incidents when I end up berating myself because it must be in my head may actually be in my cytokines. :P

I found more discussion on the connection between allergies and depression in an article from Ron Hoggan, MA and James Braly MD here:
...celiac disease would probably be found in a relatively small, but significant percentage, of those afflicted. The prior two conditions of enzyme deficiency and intestinal permeability are abundantly found when sought, and it is these features which, we suspect, dominate the segment of the population which is chronically depressed.
Enzyme deficiency would cause insufficient digestion of cereal grains, which then convert to morphine-like substances that can then pass through the permeable intestinal wall. Causing depression and other side effects.

Then there is the theory put forth by Dr. Theron Randolph; that some food induced reactions can cause "brain allergy". Dr. Abram Hoffer reports that depression and allergy often co-exist in his patients.

Lastly, but not least, a GI reaction causes inflammation. This inflammation affects the functioning of the GI tract, possibly for a long time after the original antibodies have subsided. As I was one told...If you scrape your knee, it doesn't matter what kind of knee-socks you wear. The fabric rubbing over it is going to keep the scrape raw. And it's difficult to rest your digestive tract. And if you do choose to fast, there's a recovery period. And when you're already at least 10 pounds underweight, then your recovery period is going to be longer. The prospect is daunting and a long recovery period can be likened to chronic illness, the stress of long periods of not feeling well coupled with a sense of "when is this going to hit again" would take a toll on anyone.

So, there it is. I'm not lying in bed letting the depression overtake me, I'm reading and learning more. Now, if only the medical personnel weren't trained to look at all the symptoms, shrug and say with a confident, sympathetic smile..."Hon, I think you're just under too much stress."

Sure, stress is a piece of the puzzle. But it isn't the only one.

Monday, December 22, 2008

It's beginning to feel a lot like Christmas...

Despite my aforementioned physical issues at the moment, I did want to include a happy post today.

It's beginning to feel a lot like Christmas! Baking has rejoined our Christmas routine, and there is just something about my youngest helping me in the kitchen that makes things brighter. She takes great pleasure out of baking, and the stress involved is generally worth it.

Our latest creation is sugar cookies. We took a regular recipe, adapted it to suit our needs (with oil and rice flours), chilled it and broke out the cutting board and rolling pin. This was my first time using this rolling pin...bought brand new so that I could have the pleasure of baking again, but I haven't been motivated enough. (See, I'm not really depressed...)

I warned her in advance that new recipes don't usually come out that great the first time. That there would be some tweaking involved. That she should not dissolve into tears or throw anything if it wasn't working out the way she imagined. I shot my oldest a "look" and informed her that gluten cut out cookies are just as frustrating, the only difference being that "normal" flour has many more experimenters and is, well, a lot cheaper to fail with!

She huffed at me. My youngest opened her eyes very wide, nodded solemnly and promised not to get upset if we could only experiment. And we did!!!!They're just as nummy as they look...even better; since they don't hurt my tummy and my husband claims they're better than regular sugar cookies. (With the caveat that he only eats regular sugar cookies because the snickerdoodles or oatmeal ones are gone.) We did lose a few angels to pan-sticking and other breakage...but I was very impressed and walking-on-air happy. You might need to try a few gluten free, er, "goodies" to fully appreciate the sensation.

Now, if only they'd lasted long enough to decorate with mini chocolate chips...Or, something else uncorny...

Depression, perhaps?

Although I've had this blog for some time, I don't think I've ever formally defined it's purpose.
I'm not sure anyone formally defines their blogs, so hopefully that isn't a problem!

Is it here to detail highlights of my life? To inform others of the trials of allergy free living? Perhaps it's an attempt to connect and say "you aren't alone" to strangers who are in their own "Can it really be just stress?" quandry. Or maybe it's a bit of everything. I know there are a few friends who follow faithfully, a few family members who drop by occassionally, and fellow allergy sufferers who pop by just to nod and agree...or shake their heads and say to themselves that they're glad they aren't THAT bad off. :P

I think today's post is directed at the latter.

I've been dealing with some sort of reaction for nearly a month now. I got a good dose of...something...just around Thanksgiving, vomiting and all that good stuff. It hit at a particularly poignant moment since I was dreading leaving the house and then conveniently ill.
Maybe it was stress?
But why hasn't it gone away? And why is it getting worse at moments when I want, very much, for it to get better?

I've found myself wondering which comes first, the reaction or depression. Because while it's much harder to deal with a reaction while depressed, the fact is that it's pretty depressing to feel like there's a shattered disco ball being used like a pin-ball machine in your abdomen, especially when the muscles are also feeling very sore and bruised. And then the chills set in, ironically I feel like it's a hundred degrees in here while my teeth are chattering loudly enough to accompany the CD player and I'm sweating. Ick.

The only difference between now and the days before I'd identified triggers are that I harbor hope. There's hope that I'll track the reaction down. I know what normal is, sort of. At least...I know this isn't it. And it isn't a constant tide of pain vs discomfort. There's bits of normalcy in there. There never used to be.

I'm hopeful, but I'm scared too. I don't want to deal with this on a regular basis. I don't like not knowing when it's going to hit. Whenever it DOES hit I get so skittish. I shun company, I hide out at home. I want to ignore the phone and the door and the call of the grocery store (It's not like I'm that hungry, after all.) I used to get the stomach flu, and it was a distant memory within the week.

Now, it's long and drawn out and there's very unnecessary weight loss involved...especially when it ISN'T the flu.

To be honest, the discomfort and embarrassing nature of this malady isn't the only thing I'm afraid of. I know I ought to slip into the doctor's office, recite my list of complaints along with their severity and wait for prognosis. And I know that it's not serious...I'm not even concerned that it might be serious. What scares me is the thought that there's nothing more to do.

I know I don't have something scary like Cancer. I'm lucky, very lucky! I also don't have something scary but treatable like diabetes. Again...I'm lucky. I can eat chocolate now and then! But the mystery digestive ailment that responds violently to comfort drugs and pops up mysteriously; tracked to triggers such as minute amounts of corn in the new tube of my usual toothpaste or helping the kids to decorate "real" gingerbread houses is getting to me. I wish I had something to say other than "I'm just not feeling well today," I feel so whiny. And I'm whining about whining which simply makes it worse!

At any rate, I go back to my checklist. Foods haven't changed drastically, or even that subtly. All the same ingredients, all the same brands, all the same labels (even on eggs). Maybe it isn't food. I'm more prone to reactions this time of year, usually tracked to a trigger but maybe I'm wrong? Maybe I'm crazy? (Wait, blind tests have proven there's SOMETHING physical occurring beyond the state of my psyche)

What about stress?
It's my official diagnosis, one I've been given countless times. Maybe I'm depressed, something I've considered as well.
The thing is, I'm more mad at my body than I am "stressed". And I feel too happy to really be "depressed", if that makes sense. I may not feel like going to a downtown museum and walking through the crowds of the Christmas displays but lying down and listening to my kids play with their nativity set makes me grin. And I enjoy the Christmas displays when there aren't elbows in my ribs and strangers feet tripping me. When I awaken beside a bedtime invader ("It's cold in my room!") I just lay and savor the weight of her body and the sound of her breathing. Candles burning in the menorah filled me with peace. I missed reading together when a child fell asleep before her bedtime book.

Would I feel that way if I were depressed?
The landlord stopped by unexpectedly, and caught me with the living room a mess and my baking unfinished. (At least the kids were dressed...) And I laughed, even at the gentle critique ( yard's a disaster, it's worse than the living room. It's cold out there for cleaning, though!). If stress were the issue, wouldn't that have tied my stomach in knots? Or wouldn't I lose my calm when I discover that there are beads, scissors and a flurry of paper snowflake-makings filling my now-recently vacuumed living room?

Okay, so I did think "why even bother"? But then the snowflakes made me smile. And if I were depressed, I wouldn't keep re-cleaning...would I?

I'm starting to wonder how many other allergy/digestive sufferers go through this process during a reaction. If you struggle with depression in conjunction with a reaction (but don't know if it's really depression) let me know I'm not alone! You can let me know if I'm crazy too...everyone else does :P And if you know of a good way to get through the emotional aspects of a reaction cycle, post that, too. It's the most frustrating part. Because sometimes it leads to not caring anymore. Whats the point if its not going to permanently cure me?

I know that eventually I'll be fine again. I know that it isn't just stress. I also know that it stresses me out, and that stress exacerbates maybe it is stress to a degree. At any rate, I have to get better. I want to enjoy playing with the kids. We've got playgrounds to explore, and games to play, and recipes to adapt. Not to mention holidays to celebrate...

Saturday, December 20, 2008


Last night, I half awoke to find myself...looking at myself. My child-self, laying there on my pillow. I smiled, and wondered to myself what was wrong with the nose, because you see--my nose looked wrong, it was too pretty. And, I never had freckles.
As I was coming awake to ponder the mysterious appearance of freckles on my child-face; the form beside me sighed, stretched, and the shadow of my husband briefly graced it's features (Ah! It's his nose. Sort of.)
And sleepy eyes blinked open, smiling sheepishly (now that's my husband's grin) and said, in my daughter's voice "I had a bad dream..."

Sometimes I forget they inherited more from me than allergies.

There's love of books, they both got that. And my oldest hates math as much as I did. The youngest is shy to an extreme at times. (Although, my husband claims a bit of responsibility for that) They're dreamers, and thinkers, and plotters and planners. Their imagination is vast and their dreams are big.

For all that they inherited, they are simply themselves, and I'm amazed each day that I was lucky enough to become their mother.

Monday, December 01, 2008

Giving Thanks

This Thanksgiving was far from stressful.

We decided to ignore the fact that we live near virtually all of our family, ignore our friends and just relax (Sorry guys!). I didn't have to worry about timing dinner, or about how it would taste to tastebuds other than our own. The house didn't have to be spotless. And we didn't have to go sit on anyone else's couch and pray that gluten crumbs avoided our safe dishes :P

It's funny how large a part food really plays in our life.

We had a relaxed morning, other than the fighting kids. (She's looking at me! "She looked at me first!" But, Mommy, I was just looking like this, not like THIS!) We quickly dragged those fussbudgets out on a Playground parade, but that's a different blog. Found a new letterbox, planted by a new letterboxing family. A new cool park, near a generic but fun one.

The unique excitement of the day was when we spotted 3 turkeys (or were they vultures?) eating an opossum by the side of the road.

Not the kind of thing you see very often in CA! Well, in our urban-esque neck of the woods, anyways. Opossums are in zoos. So are vultures. Turkeys live on farms and sometimes in Disneyland.

Our home cooked meal consisted of a mess of Sweet Potatoes peeled, chopped and roasted with onions and a bit of oil. Another attempt at stuffing (It's getting closer all the time!) Some Green Beans with margarine for the girls and turkey breast for the husband. Oldest ate a bit and said it was good...but not good enough to give up being vegetarian. (Whatever that means, she did choose to eat turkey...) I scrambled a few eggs for my own protein source, and told youngest she had to stare at the turkey on the table real hard, and look at my eggs without screaming. In exchange, she didn't even have to put it on her plate. I'm just grateful she tasted the sweet potatoes and stuffing. And gobbled down her green beans.

Dessert was pumpkin pie-scicles (courtesy of an adapted Family Fun recipe...the kids want more sugar and spice next time) and apple slices baked in chebe bread pockets. Wow! It was a veritable feast!

Now that it's over, we're left counting our blessings.
Like my youngest, I'm grateful for trees, and air.
Like my oldest, I'm grateful for allergy free food, and for the Warrior's series of books (or at least, that she's actually finishing books)

I'm also grateful that we have a roof over our heads.
I'm grateful for the nights the kids spend asleep in their own beds.
I'm thankful for dh's new job (and that for many months, our biggest worry was simply getting a new job.)
I'm thankful for my husband, even when I'm mad at him.
I'm thankful for my kids, even when I threaten to sell them to the gypsies.
I'm thankful for the few precious moments I steal to myself at bedtime, soaking in a warm hot bath. And I'm thankful for the voices that shatter my peace (although I'd rather they stayed in bed, quietly)
I'm thankful we have toys to strew across the floor, and that the kids still want us parents to play, too.
I'm thankful for the mornings I wake up with an elbow in my eye and pins and needles in my leg from a child draping themselves uncomfortably over me in the night.

As hard as it gets sometimes, the rough spots remind us how good the good can be.
The past year or so has been filled with a lot of hurt, and I'm grateful for that too. Because now I can see the light that lays ahead.

If you're reading this, may your holiday season and all your days be filled with light and blessings.

Sunday, November 23, 2008

"Make new friends, but keep the old; One is silver and the other gold..."

Youngest has started Daisy scouts, and the campfire favorite is stuck in my head.
"Does that mean that new friends are better than old friends?" One child asks.
"No," I reply, explaining that it's important to keep in touch with special friends but it's also important to play with lots of different people.
My oldest pipes up, informing me that silver is ever so much better than gold.
I agree that silver is pretty, and she rolls her eyes in a way that only tweenage girls can master. "Moooom, it's BETTER than gold. People do CRAZY things for gold. I wouldn't want Gold."

That girl. I love her but I worry about her. This is the same child who, when asked if she would like to be an actress when she grows up, thought very carefully on the subject and then said yes. She'd enjoy being an actress very much if "they" promised not to pay her any money.


That's right. Well, she amended, they might be able to pay her like 1 or 2 dollars. Or maybe enough to adopt a dolphin. But not a lot. She definitely doesn't want to be a millionaire. That sounds like too much responsibility.

Youngest on the other hand would like to have more holidays like St. Patricks Day and Easter, when she might find a few coins hidden specifically for her to find. She very seriously tells me that she needs more money, but chores are way too hard for someone whose only 6.

So am I doing something wrong? Or something right?
The hardest part about parenting is that I might never know...Unless they tell me in 20 or 30 years.

Friday, November 07, 2008

My girl, my miracle

Last night was a rough night for my youngest. So I whispered, as I often do, that I love her. And I called her my little miracle.
Because that's what she is.
"Why?" she asked.
"Well, because," I answered. And again began the funny story of her birth.
You see, I thought I was pregnant. But the doctor said no.
And of course, in the end, she was born. Against a few odds.
The story makes her laugh. But it isn't what she wanted to hear.

"But why?" she insisted. Why indeed? Simply because. Because she lights up my days, because she makes me laugh, because she completes our family. Because she's her irreplaceable self. There are too many reasons to count. That doesn't satisfy her, either.

"Did you know you saved my life?" I finally say, and she sighs and snuggles close. If she hadn't been diagnosed with a nut allergy, the pediatrician would never have thought to look for allergies in her big sister. And if he hadn't put big sis on an allergen free diet, I wouldn't have noticed I felt better on one too. And then I never would have seen the allergist who told me my "panic attacks" sounded like anaphylactoid reactions.

More importantly, I'd never have spent a full day out and about at Disneyland. I'd never have spent hours at the park, and sitting through a 2 hour play would still be painful. The possibilities fill my mind and make me shiver. "You won't survive a year," echoes in my head. I keep those thoughts to myself. I wasn't living when I was sick, I was only surviving five minutes at a time.

"You saved me by teaching me how to save you," I tell her and she grins, and snuggles close and tells me she's my angel. And she is.

Monday, October 27, 2008

The funny thing with mice...

If anyone is working on a better mouse trap (and hopefully it's a friendly mousetrap, you know...the kind that keeps the mice happy and alive at least until you can release them far, far away from your own house.) cheese is not the answer.

No, a mouse will pass up forgotten potato chip crumbs and stale fish crackers in favor of ancient, empty plastic easter eggs and plastic, enclosed ant baits. That can't be healthy.

Ew. And you don't want to know.

I wonder if that's stress, too? Or maybe they're just as wary of corn as I am?


Friday, October 03, 2008

Fixing FAAN

On another board, I was asked what my solution is, since I don't think that FAAN is helping. Scratch that, I know that in their good intentions toward the 90% of food related life threatening reactions, they are hurting the rest of us.

This surprises many. Especially the ones who deal with food allergies every day. But it doesn't surprise those of us dealing with corn. Corn is everywhere, it's touted as hypoallergenic, and it doesn't have to be an ingredient in the traditional sense of the word to jump out and attack a sensitive individual. Many sufferers react to food they later find out was wrapped in corn dusted cryovac. The irritated CSRs tell us that these are company standards, federal standards, it's just the way things are. They don't have to tell us that the package has poison in it, just the food. (Sorry, but corn, to many, is poison.)

Maybe the most frustrating thing is that I actually see their point of view. It's just a bit, and of all their customers...just one doesn't matter. The odds are, to them, that one phone call is a fluke anyways. Someone who really doesn't "get" the way things work.

That's why I wish the FAAN were doing things differently.
If I were to design a "better" food labelling program, this is what I'd start:
*Labelling sources for all ingredients where feasible. Vitamins (including excipients), xanthum gum, etc all come from somewhere whether it's petroleum or corn or soy.
*All Customer Service Reps need to be trained minimally in the existence of food allergies and the broad range of reactions. Then they need to be able to access whether or not a product contains any specific ingredients. They can answer yes or no to specific questions without giving away secret recipes. (Asking doctors to call is not acceptable. It seems simple enough, but very few medical personnel have the time or energy to put into researching daily food. Or even meds, for that matter.)
*Source materials for packaging need to be logged as well. There are computer programs to cross reference things, in this day and age it shouldn't be impossible to get a straight answer within 24 hours.
*Allergen and source labeling need to extend to medications. The excipients in different brands of drugs can cause problems and that needs to be addressed.
*Most importantly, education. Any food can cause an adverse reaction. All adverse reactions are undesirable and only an individual can decide for themselves what the acceptable risk is. Therefore, individuals need access to information about their food supply. Period.

I'm not a member of FAAN because only 1 of the several people I've dealt with there have seemed remotely interested in the statistically insignificant allergies. And yet every company I contact seems to send me to FAAN. For the most part, they diplomatically refer me back to the FDA who kindly responds that I may want to contact the FAAN for more info.

I've found that companies are proud to comply with FAAN's top 8 guidelines, and yet get distant and suspicious when they are pressed for more info because those guidelines don't meet my needs. I'm happy with a simple life...but seriously, when apples aren't safe because they're waxed and plain grains of rice are dusted with cornstarch laden vitamins "for the consumers own good" things are getting a bit out of hand, don't you think?

It seems simpler to just disclose. Yeah, there's corn in this. Let me decide, in the end, what kind of risk that means for me.

I'm sure it's stress...

I'm worn out and cranky, that's all. I'm hyper sensitive and hormonal.

I'm embarrassed that my daughter's class needs help making papier mache, and I can't do it. The starch, the flour, the blowing up of balloons...all poison to me. And I'm a stay at home mom, I'm supposed to do these sorts of things. Some parents take time off of work. Hint, hint.

"So, you'll get sick. Big deal, you have time to spend a few days in bed," I hear myself thinking.

The landlord laughs at my complaint that I need a working sink because I can't eat out. Can't.
A stranger overhears my dinner frustration and says "Honey, that's when you pick up the phone and call for pizza." I can't? They wouldn't stand for that. They'd make the dr give them something.

My daughter remembers at 8pm that there's a party tomorrow and of course she's providing the cookies, she's the one with the allergy. Do you know how much it would cost to feed 30 kids store bought allergy free cookies? I turn on the oven.

I find an email in my inbox stating that they've decided to have a pizza party at an afterschool event, and they know that I'll be happy to send a safe alternative for my allergic daughter. I wouldn't want her to "feel left out".

We're invited to a party, don't bring anything! But they forgot the promised fruit plate and veggie tray. Oh well, it happens. We leave early, the kids are hungry.

I overhear a comment that "Those food allergy people need to grow up and learn to cook," in response to some news story. I read comments on boards suggesting that food allergies are in our head and I want to scream. Spike their food with ex-lax, send them to work and then shrug and innocently ask if they've considered stress as the culprit? Or maybe it's just in their head.

And then my mind wanders. I actually think those of us who deal with food allergies might manage stress more efficiently than "normal" people. Because we deal with it daily, a constant knowledge that each bite of dinner is a dance with danger. A kiss can be deadly. A lunch date needs an inordinate amount of planning, analyzing and agonizing. A simple invite to a kid's birthday party can become a feat of ingenuity to spare the host's feelings. And we appear to make it all work seamlessly, magically.

"I'd never manage," someone tells me when I finally break down and vent. But what other choice would they have?

Saturday, August 09, 2008

And now I'm a dinosaur...

Ah, kids. They say the funniest things.
My kids do, anyways.

We were recently blessed with the visit of my 3 year old niece. At lunch time, she politely clambored up on a chair, ready to share the meal, but was just barely tall enough to see over the table.

I, of course, told my oldest to grab the phone book.

Blank stare.

"The what?"
"The phone book. You know, that big yellow book over on the shelf under the cookbooks."
She shook her head. My youngest piped up to tell me we didn't have a phone book.
I told them we did. I described it. I mentioned it as the thing we use to look up phone numbers sometimes.

My oldest frowned. "Uh, mommy, that's what the computer is for!"

And that's not all. After I finished laughing, and agreed with her, and my niece pointed out that she was a big girl and really didn't want to sit on a "boost" anyway (She could use her knees just fine); my kids asked more about the mysterious phone book. First I pointed out that we do have one, a current one, they just don't see me use it very often. (It's not like I call for take out every, well, ever actually...)I told them that the phone company sends it out and people used to use it all the time to look up phone numbers and addresses of stores and even each other. I used to sit on one at my Grandma's house when I was little.

My youngest nodded sagely said "Oh, you mean before they had TV."

And my oldest wanted to know if the radio had been invented yet.

What will they do when I confess that I used to have to find my way around without GPS?

Saturday, August 02, 2008

That's One Way to Look at it...

On the brighter side, my family went to the school earlier. We were planning on spending the morning riding bikes, or at least...the kids would ride while my husband ran alongside shouting encouragement and I took pictures. It's a fun outing. And eventually my oldest even let him take a break and watch with me. :)

While there, the girls found some trash in the bushes. Some bottles, and bottletops. They read the lids and asked us about them. "Alcohol," we said, "Someone must have left those behind."

My oldest started explaining alcohol to the youngest, then. It's bad. It makes people go crazy, which is probably why they were loopy enough to litter, at a school of all places. (My husband and I had raised eyebrows, we aren't exactly prohibitionists, though we don't drink much.) Then she paused. "Except my teacher said red wine is good. It's really healthy and makes you relax if you drink a little bit and so I think we should have some a lot of the time when we grow up. But only for grown ups." She paused again, as my husband and I tried hard not laugh and asked each other whether the teacher had any idea what message she had gotten across.

"Except for Mommy, Mommy's allergic to wine, probably."
I nodded, I probably am. I wouldn't trust it. And frankly, I'm not interested enough in drinking to even take a chance. I can be goofy without alcohol, and heaven knows I'm capable of getting sick as a hangover on the most trivial seeming things.

Then her face lit up. "Mommy, you're allergic to going crazy!"
And my youngest took up the chant, and gave me a huge hug, "Yay, mommy can't go crazy! She's allergic!"

I guess that's one more blessing to count. I'm allergic to going crazy. :)
(I'll just remind myself of that fact the next time I argue with a customer service person on the telephone who's trying to tell me that corn isn't one of the top 8 and therefore isn't a "real" allergy.)

You Can't get to heaven without Gluten...

No, I don't believe it.
But, the woman who was going door to door trying to recruit for a new religious movement does. Or did. I'm not sure if I convinced her.

You see, I like to be nice to these people. I suppose that's the problem. They knock, offer to discuss theology and I smile and say I only have a minute but, sure, why not? I'm up front with the fact that I am a believer and not planning to convert. I know, I know...I present them with a challenge.

But I never walked away hurting before.

Today's evangelist is convinced that there is a Mother God in addition to (or perhaps combined with?) the well known "Father" God. I followed her reasoning, smiled and said I'd pray on it. Who am I to argue with a belief? I keep an open mind, and do my praying in private.

Then she asked if I realized that I couldn't get to heaven without taking part in Passover or Communion under the Mother God.

Um, what?

She went on, some scare tactics blanketed in a loving, concerned tone. She asked if I had ever taken part in a Passover or Communion. And her question shook me back to reality enough to sputter that I had a medical condition which prevented me from ingesting gluten grains.

Yes, even holy ones. They cause digestive damage.

"But, oh, you poor, then you can't..." the horror danced over her face, tears swam in her eyes, surely there was some way...but, just a little, it clearly states right here in Revelation that you must partake of the body and blood of Christ in order to gain entrance to heaven. You've never participated? Confusion, compassion, concern. Is this a heathen? Who can quote the bible back to me?

I was suddenly aware that my daughter was watching with wide eyes. I pulled my dignity around my shoulders like a cloaked, asked for the right words and managed to say in an even tone that if God saw fit to allow me this condition, known as Celiac Disease, then surely he wouldn't banish me from Heaven for not choosing to suffer the consequences.

She grasped my forearm, and gave me that "look". One you might give to someone you know isn't going to survive but there's nothing more you can do. And left.

Communion has been a sore spot with me for years. I wondered why my first Communion sat so uncomfortably in my stomach, and why I felt so nauseous after Communion Sundays. I quit going up front, at times I requested just the blessing.

Was God trying to tell me something?

I married a man who is half Jewish. In the Jewish culture, the Passover is celebrated with the drinking of wine and the ingesting of Matzoh. There's more to the celebration, much more, but those are the relevant points for food allergies.

Every year, around spring, the question of whether Matzoh is safe for Celiac patients comes up somewhere. And every so often, during my more reflective states, I notice the concern surrounding communion. Jesus broke bread, at the last supper (Which may or may not have been a proper Passover Seder) and instructed his disciples to break bread together, to share wine together, to eat and drink in remembrance of the sacrifice He made.

What happens when a true believer can't take and eat, or drink?

The Catholic Church has struggled with the answer, as have Rabbis. Surely God doesn't want his children to suffer intestinal damage simply for taking part in a religious ritual. And yet, what does that mean? Will he heal them for acting in faith? Or do we need to have faith that he will forgive us for abstaining?

It seems to me that the right route is often the harder one. And I doubt this case is any different. Just more emotional, because it's about devout believers debating their health versus eternal life.

I choose both. If suicide is a sin, then surely choosing to damage the body God gave you is one.

I'm not ashamed of that decision. But, the look I was given earlier continues to haunt me.
Another reminder that food is an integral part of our society. And when there is a restriction, it can impact you in the least expected ways.

Saturday, June 07, 2008

Food Allergy study Rant

Apparently, hundreds of parents are simply crazy. Yes, folks, studies have shown that regardless of parental confidence in their children's "allergies"; medical facts can't prove that the kids do, medically speaking, react.

Poor children are being deprived of "life giving" nutrients because the parents are hypochondriacs. At least, according to some specific guidelines that don't appear to take into consideration the potential for outgrown allergies, or exageration of symptoms to invoke cooperation, or the possibility that the reaction is delayed or even needs time to build up because maybe, just maybe, these parents have done a decent job of avoiding exposure and thus reaction.

Now, I don't know about you, but I find it absurd that its even a question of who's right, dr's or parents. Do schools need to accommodate parental requests regarding what children are told to ingest? Do parents need to relinquish control since they are required to send their children to school anyways?

I think that we've reached a point where the schools are providing too many throw away foods period. The kids don't need it to begin with.

But no, it's the parents who have a problem. How dare we be concerned with kids health! How dare we deny them donuts! How dare we nix nuts! How can we possibly ban pizza?

Many children spend half their waking hours under supervision of their school. Most then skip off to daycare for a few hours before heading home for dinner and bed. Is it really unreasonable that parents are noting symptoms and looking for answers?

Attitudes such as this "Fake food allergies" make parents feel even more out of control. Because their valid concerns are undermined by those who side with statistics. Statistically, I'm not going to drop dead when I hand out popcorn at the spring fling. That doesn't mean that the nasty rash and intestinal discomfort I later experience (or even begin experiencing after a few minutes) isn't going to irritate the heck out of me. And my kids?

I want anyone in a position of authority over them to take this whole "certain foods cause unpleasant symptoms" thing seriously. That may mean labeling a "little intolerance" as an allergy. At least until the medical community gets their act together and comes up with an appropriate label to be used for those who need food restrictions but are not anaphylactic.

A hundred years ago, food allergies may not have been prolific. But, foods were easier to avoid. They weren't nearly as invasive. They were often "whole". Easy to identify. I don't know about you, but common sense tells me that if every time I ate cornbread I threw it up and spent the next several days in a good deal of discomfort, I wouldn't have even bothered tracking down a doctor and trading a few chickens for his diagnosis of "I wonder if it's something known as an allergy..." I'd have followed my instincts and stopped eating corn bread. And I'd probably have noticed in a hurry that Grandma's cornstarch thickened pudding bothered me too.

A hundred years ago, I'd have had a few other options. Not the ones I have now, perhaps. Tapioca, rice, buckwheat, quinoa, amaranth weren't well known and variety wasn't necessarily the spice of life. But, seriously...salad would have been safe. Potatoes, apples, water, milk...

Food intolerances need a label now because our society has changed. Parental wishes need to be followed because we are the parents. We are the ones who put the kids to bed at night and wake them up in the morning. We brought them into this world, and we have every right to not only keep them in it but keep them happy to be here. Some would call it an obligation.

I don't care if someone out there thinks that food allergies are some freudian fraud, or if they are simply another Darwinian method to thin the herd. I don't care how many people are actually at risk for anaphylaxis. I want it acknowledged that it is a valid threat.

I want it acknowledged that food can be fatal. I want it acknowledged that food is just food, it isn't the end of the world if you can't feed me or my kids. It isn't the center of all celebration. No one is suffering for lack of sugar, or need for pizza, or wasting away for the want of a PB&J. Food restrictions make life hard. And "studies" like this, that indicate people choosing to improve their or their children's health through dietary intervention are actually in need of a psychiatrist simply make life harder for those who have valid reasons for adapting their diet.

Even if we don't have a valid reason, if it makes us happy to avoid something like the plague who is it hurting to accept that choice?

Wednesday, April 30, 2008

Corn. It can cost a Kidney.

The true risks of a corn allergy hit home last week.

I awoke with the tell tale signs of a UTI. Thankfully, I recognized them and decided to get seen and tested ASAP. Urinalysis showed blood and the early stages of an infection. I was written a script, and sent on my way.

The pharmacist showed me the ingredients for the antibiotic of choice. Most of them were corn derived. The company that manufacturers is was closed for the evening. The compounding pharmacist said "We'll get back to you."

The next day, the antibiotic manufacturer didn't want to talk to me, because I'm not a doctor. No big deal, I was almost feeling better. I chugged water like crazy, rested, and waited for the compounding pharmacist.

The third day I did not feel well. The doctor called to see how I was doing. I told them, and they wanted to see me. They asked how long I'd been taking the antibiotic.

"You don't even have it yet?"
There was a sense of incredulity. Here is a simple to treat infection. One of the few that demands immediate treatment with an appropriate antibiotic. One that can be serious if left untreated. One that we have an appropriate medication for. Widely available. Well known.

And yet I, personally, could not access it.

I talked to the doctor for a long time. My options were to start the antibiotic, and ignore the corn. This would cause symptoms. The symptoms probably would not be life threatening. But, they would interfere with knowledge of whether or not the infection was responding to treatment. The medical community would not know if I was reacting to the antibiotic or the corn. I'd be dealing with 2 forms of physical stress. And it would lengthen my recovery time (the last I add in from experience. Corn causes intestinal inflammation, and I have digestive issues for weeks after accidentally ingesting it)
I could also be hospitalized for an IV infusion. This would bypass my digestive tract. It would probably avoid causing me much of a reaction, assuming they didn't use a corn based IV solution. (Yeah, I'd be checking each time. I'm sure the nurses would want to go on automatic, and be frustrated that they couldn't) It would cost a fortune. It's overkill for a run of the mill UTI.
I could wait, do nothing and lose a kidney.

We decided to start a different antibiotic, one that didn't have corn but was not specific. It would hopefully do *something* while we waited for the culture to come back with the exact strain of bacteria that had invaded my urinary tract.

By this time, my back hurt. That meant it had entered my kidney. We were frustrated that a "normal" person would have been almost through with their antibiotic course by this time, and relatively symptom free. I was getting worse, and not because I was obstinate or trying to ignore medical advice. I wanted help. They just didn't know how.

The pharmacist could not guarantee the brand, and the capsules could have corn in them though the drug itself, amoxicillin, was not adulterated. So I agreed to open the capsule, and take it in applesauce or another semi-liquid. The taste reminded me of the pink stuff I took when I was a kid, except that it didn't make my stomach clench and wasn't accompanied by a revolting bubblegum aftertaste. For future reference, antibiotics are better masked in carrot soup than applesauce.

The antibiotic worked for a few days. I woke up Monday feeling worse again, and shortly afterward the doctor's office called to say that the bacteria was resistant to amoxicillin. Then I got a hold of the compounding pharmacist, again, who apologized for taking so long and promised to get my Cipro by evening.

2 days on antibiotics, a week of frantic calls and office visits, and the only symptom still bothering me is an intermittent back pain and some nausea, which is common on antibiotics across the board. Kidney involvement is always risky, and permanent damage is a very real possibility.

All this simply because...there's corn in that. There's corn in everything, and no one knows it. Generally, I laugh. It's funny, people hear corn and they can't see the big picture. A little here, a little there. The FAAN calls it hypoallergenic. It's known by a thousand names. It has a myriad of uses, and growing. It took years to learn what I know to stay relatively safe. And yet, when I most need my knowledge, when it's necessary to turn to the medical community and work together for a solution, we're both lost. The pharmacist can't tell me what antibiotics might not have corn in them. The doctor can't find the information she needs to choose the best of a limited amount of pre-made corn free medications. And this time, my needs were simple. What happens next time?

Statistically, few people react to the excipients of drugs. I'm lucky. I'm just a statistic. One in a million. Insignificant. Unique.

But I exist. And I'd like to keep my kidneys, thank you very much.