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Sun, 10 Aug 1997 20:00:59 -0400
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<<Disclaimer: Verify this information before applying it to your situation.>>

To parents and children alike:
Some fourteen years ago I was diagnosed with CS the old-fashioned, intestinal
biopsy way.  These days, the memory of that procedure, and the preceeding
days, are shrouded by the passage of time.  Confusing recollections of a cold
table, fear, and pain are all that remain.  I can recall, though, enduring
countless visits to doctors and specialists, who would tap a vial or two from
my veins, order a few more tests, and send me on to yet another hospital.
 With a little bag filled with coloring books and stuffed animals, I padded
along pediatric hallways in my booties, holding my head high with a facade of
bravery years in the making.  Bravery, I thought, for my parents...not for
the little girl trembling inside.

I don't think that my parents were cruel for putting me through that.  They
did the best they could, struggling to find answers.  Off the charts in terms
of height and weight, photos of that time period depict a starving little
ghost of myself.  I prefer not to look at them.  But my parents never gave
up, even when some physicians deemed it "all in their head."  Today, at
eighteen, I'm off to college to pursue a PhD in pharmacy.  I work at a
fitness center, and I'm in great shape.  I eat out with friends, go to
concerts and parties, and live my life in the typical teenage regime of
sleeping, working, and socializing.  But I could never have done so without
my parents.  So to all the other parents of Celiac children out there, some
of whom have asked me for advice in the last few years about how to approach
their child's situation, I would like to offer a few thoughts...

Don't give up even when the answers are elusive.  Many doctors have only
vaguely heard of CS, much less are intrinsically familiar with what it
involves.  There are, however, talented physicians who have experience
diagnosing and advising about the illness.  One of them was my pediatric
gasteronterologist, Dr. Schaffner, at Rush Presbyterian in Chicago.  If you
feel that your doctor is not doing the best to assist you in your efforts,
try to find one that will.  If my parents had listened to the doctors who
told them to put me on a "whole grain diet," or even to "see if it passes"
because they couldn't find anything wrong, my life would be...well, perhaps
it would not be at all.  You and your child are most familiar with how he/she
is feeling.  Trust your instincts as parents.

Take away the blame.  First of all, though, please make sure that he/she
knows--especially the young ones--that CS is not "their fault."  They did
nothing to deserve it, or their sickness, or anything like that.  I'll never
forget as a little girl watching "The Sound of Music" and hearing her sing
that "nothing comes from nothing," and thinking that my condition was some
sort of punishment from on high.  As parents, realize that your child is not
"flawed," and that you are not a bad parent for birthing a Celiac.  While
some of us are, it seems, genetically pre-dispositioned to CS, it would take
advanced genetic counseling (if that's even possible) to predict its
occurrence.  And since most doctors don't even know the signs, who's to say
that you ever could have?  Perhaps some parents harbor feelings of
guilt--whether from having to put their children through testing to "denying"
them the "normal" food--and that has to be dealt with accordingly.  "It's a
shame"--I know.  "It's not fair"--I've been there too.  I can remember
watching the other kids eat.  I would smile magnanimously and pretend that it
didn't bother me, while inside I was raging with the utter unfairness of it
all.  "Why me?"  My parents would tell me that it could be so much worse, but
it took years for me to realize the truth behind their words.  I did nothing
to deserve it, yes it's a pain, and indeed, things could be light years more
difficult.  Why am I a Celiac?  Who knows.  I simply am, and I'll have to
deal with it for the rest of my life.  As my favorite quote from Shawshank
Redemption said, "I was in the path of the tornado."

Try to make things as normal as possible for your child.  My mother in
particular helped me in this category.  She provided countless baked goods,
snacks, and even a "diet list" (Jessica's Diet--a several page guide for the
parents of my friends to follow, which included a brief description of CS,
some of my favorite foods, and other pertinent information).  I honestly
couldn't say how many parents read it, much less understood it, but many
tried to provide popcorn or some other snack at their house.  Most of the
time, though, I'd have a few cookies stashed in a pocket when I'd bound out
the door.  My mother also taught me to bake when I was very young, so that
I'd have the skills to care for myself as a Celiac adult.  I must say, I can
whip up a batch of whatever that will wow my "beaus" in no time at all :)
 Most of all, though, my mom was there for me--baking and inventing,
comforting and providing.  If there was a birthday party, I had my own cake.
 If someone at school was having a birthday, I'd have my own treat.  And when
it was my birthday, well, GF cupcakes all around!  I read some parents
providing their Celiac child with carrots or "nutritious" snacks at other
kids' parties.  That's all well and good if your kid truly likes that stuff
like the other kids enjoy chocolate cake with fudge frosting.  But if it's
just an "easy" substitute for you, you're not really doing your child any
favors.  I can tell you how ostracized I would have felt munching on a rice
bran concoction while my friends dined on M&M cupcakes.  Granted, I'm not
trying to say that you should coddle him/her with a dentist's nightmare in
baked goods, just that it helps if you have a comparable (that's the key
word) substitute available.  My mom used to store food in the "big freezer"
while baking, so I could micro it on later dates.  She didn't work until I
was in junior high, so that made things much easier than for many busy
families these days.

Remember that being different hurts.  Kids can be shockingly cruel.  It's
amazing the innocence associated with childhood, considering that most
playgrounds look like an outtake from "Last of the Mohicans."  I had
"friends" tease me about flour, and I received countless dumb questions and
comments.  "Why don't you just eat a little bit every day and build up a
tolerance?"  Even some of my own extended family refused to acknowledge my
CS.  "This is some weird allergy your father made up," one rather callous
uncle said.  How could I explain to them all that I was terrified of bread?
 That my memories of medical procedures and sickness haunted me in my dreams
like ghosts in the halls?  There were a couple of major mishaps that enhanced
my wheat weariness.  The first happened when I was in fifth grade.  During
outdoor education, I had a severe gluten reaction (despite all our
precautions--painstakingly planned--to avoid problems).  My teachers, scared
that I was having some sort of "fatal" CS "episode," called an ambulance.  I
was okay, but the trip that I'd been dreaming about and planning for months
ended much too soon.  The second was sophomore homecoming.  The restaurant
that we'd visited beforehand and spoken with the chef served me a breaded ice
cream desert.  I didn't notice the flour until it was too late.  I was too
caught up in the excitement of my first "real" dance (which I had to leave a
few hours later because I was so ill).

These days, I tend to stick to one or two cooperative restaurants in the
area.  Or, I opt to eat at home, or make dinner for dates.  I must admit,
though, that there are times when I wish I had the freedom to eat whatever I
chose; to look at a menu, and just pick what looks good, without having to
grill the waiter on what sort of sauce the meat has.  I wish I had the
freedom to adhere to the manners I prize, and not make a scene.  I confess to
sometimes failing to hunt down the origin of those anonymous starches that we
all know and love, and not always asking to read the label of the hot fudge
topping on a sundae.  After all these years, I still hate the weird looks and
sideways smiles I get when I ask for a hamburger without a bun at McDonalds.

The good news is that there are so many more options for young Celiacs today.
 Diagnosis is quicker and less painful, and many new companies have emerged
offering products and mixes comparable to the wheat equivalent.  I don't know
how I ever survived before Dietary Specialties!  Also, it does get easier
with age.  The comment that I generally hear (outside of "what, no beer AND
no pizza?") is "wow, that sucks."  So often, in my weariness to delve into
the technical aspects of CS, I say it's "sort of a food allergy" and leave it
at that.  Sadly, I've often wished that I had something that people would
understand.  At least diabetics can say "I'm a diabetic" and be understood.
 Say "I'm a Celiac" and you might as well be speaking another language.  But
with the help of increased technology and awareness, we can make a difference
for present Celiacs--diagnosed and undiagnosed.

Now, I'm off to college.  That's another challenge in and of itself.  I have
yet to see how I'll do with dorm life, but I'm going to a relatively small
school eager to accomodate my needs.  I have a culinary arsenal at my
disposal, and lots of acquired patience.  There are so many more thoughts and
anecdotes that I could share.  I've never added anything to this list before,
but I've been tempted.  Parents, please feel free to e-mail you.  I'd love to
talk to you or your child.  I've worked as a counselor for my CSA chapter,
and it is a great catharsis for me to share my experience.

Not too long ago my friend Chris and I were riding along the bike trail on a
perfect sunny afternoon.  The eternal optimist, I asked him how he would turn
my experiences into a positive part of my life.  He thought for a few
moments, and said "Well, they've helped you to become who you are today.  You
are going into a medical field, and you have empathy for other people."

My best wishes are with you always!

Jessica
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