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:                                                     :
:  Excerpts from the CSA Southern New Jersey Chapter  :
:  -------------------------------------------------  :
: newsletter: Fall 1999     Cindy Fisher, chairperson :
:                                   377 Crawford Ave. :
:                              Maple Shade, NJ  08052 :
:.....................................................:

Raising a Celiac Child, by Tom Townsend
----------------------

Unlike a lot of articles that my wife Patti and I have read, we
haven't found having a child with Celiac Disease (CD) to be that
difficult or challenging.  I was diagnosed with CD in 1996 at age 42.
My diagnosis came the week of Thanksgiving after a difficult illness
and a week in the hospital after emergency surgery on my intestines (a
long story that will not be painfully shared here).  After doing some
quick Internet research (http://www.celiac.com was then, and still
remains today, the best web site for CD in our opinion), we knew it
was hereditary and that both of our daughters (ages 10 and 11) should
also be tested.  Naturally, being the typical 90's parents, we put the
blood tests off for several months until we felt guilty enough to have
it done in February 1997.  The blood tests confirmed our suspicions
about Jessica as they came back positive.  We immediately scheduled an
endoscopy at Children's Hospital the results of which completely
confirmed the diagnosis.

Actually, by delaying the tests those few months, I was fortunate
enough to have done considerable research on the condition via the
Internet.  I also had time to learn to cook and bake gluten-free (GF).
Thus, we avoided the trauma that many families feel when a child is
diagnosed and the parents are forced to cope while they learn the ins
and outs of the diet.  We were already halfway toward that objective.

So, what is it really like being parents of a child with CD?  Well, we
quickly learned several key points that led to a successful
adaptation, at least for us.  First, we've found it much easier to
simply make most family meals completely GF instead of trying to make
two sets of meals.  For example, when we have pasta for dinner, it is
always GF (Pastariso and Tinkayada are two good ones and can be
obtained at Fresh Fields).  We recognize that doing it this way is a
bit more expensive, but the convenience is well worth it and I dare
anyone to taste the difference.  The same goes for meatballs or
meatloaf; both are made with GF breadcrumbs.  Cakes, pies, cookies and
muffins are all made with GF flours, even when the cake is for my
non-CD daughter, Kimberly.  Patti makes a fantastically delicious and
moist chocolate cake that is to die for.  (The recipe can be found on
back of Hershey's Cocoa mix container; just don't forget to add
xanthan gum.)  In fact, once we were diagnosed, all wheat flours were
banned from the house, as we never wanted to put ourselves in the
position of accidentally using the wrong flours!  Of course, not
everything in the house is GF as the cost would be prohibitive, not to
mention unfair to Patti and Kim.  For example, there are non-GF
cereals, breads (for lunches), store bought cookies and pretzels, as
well as beer (the one and only item I still miss!)

What about Jessie?  What has it been like for her?  Well, we quickly
learned that as parents we've had to adapt, be more flexible and most
importantly, plan ahead.  When diagnosed, Jessie was in 6th grade so
she was still of the age when kids are known to bring in cakes,
cookies, etc., to celebrate birthdays.  Or maybe a teacher would
celebrate a class' good performance by having a pizza party.  So what
do you do?  Well, we first sat with each of Jessie's teachers and
explained the situation.  We gave her classroom teacher a bag of candy
that could be stored in her drawer in case there were any surprise
treats that she did not know about in advance.  Was it the same for
Jes?  Frankly, no; but at least while the other kids were eating donut
holes Jes could have a bag of M&M's.  For those occasions when we knew
in advance (with help from the teacher) about a scheduled treat, we
would always try to duplicate that treat.  On many days this would
occur and I would bet that many in the class did not suspect anything
out of the ordinary which is perfect for the CD child.

We learned early on how to make a great GF pizza.  Recipes can be
found in Bette Hagman's and other GF cookbooks, or mixes can be
purchased from the Gluten Free Pantry and other mail order vendors.
We've made pizzas in advance and wrapped them in aluminum foil.  Jes
really doesn't mind eating cold pizza, as again, her main objective is
to have pizza with everyone else and not to appear to be different.
We've made many, many pizzas for birthday parties, class trips, class
parties, sleepovers, etc., and Jes is able to fit in, making it all
worthwhile from our perspective.

Speaking of class trips, you really have to think ahead and plan to
provide the proper GF environment for your child.  Trips that last a
full day or even overnight require the most work as numerous meals are
involved.  We have always coordinated with the teacher/leader of the
trip to find out exactly where they planned to be eating.  If it was
McDonalds, well that was easy as we only had to provide Jes with a GF
hamburger roll (yes, we even make those) and she knows to order a
quarter pounder w/o the roll.  Otherwise, we spend time on the phone
calling the restaurant and speaking with the chef or manager as to
what meals were being served.  Most times they are very willing to
help you out and prepare something separate for your child.  Most
times we try to keep it real simple and simply ask for a piece of
plain grilled chicken (no flour dredging please!).  While many may
frown and say that that doesn't sound very appealing, take note that
Jes is thrilled and I would suspect your child would be too.
Breakfast is generally pretty easy, as scrambled eggs are always fine
for Jes.  For one trip we actually took complete meals to her field
trip, as we were not comfortable with what we were hearing from the
chef.

The one thing that we have found to be amazing is that as time goes
by, Jes has learned more and more about the diet and has developed a
confidence level which allows her to not lean on us for every
food-related decision.  The last few trips, Jes has actually shown
little concern about her food and has said to us, "I'm not worried
about the food, I'll find something to eat".  And she does, since many
places have self-help salad bars.  Jes realizes that at worst she'll
have to improvise and eat a salad or a yogurt but that it's only one
meal and she's not as concerned about feeling left out or different.

All of Jessie's friends know about her condition, as do her friend's
parents.  Most are accommodating and have GF snacks on hand for Jes to
eat.  Jessica's best friend has even declined snacks for herself when
she realizes that there were no GF snacks for Jes to eat.  Now that's
a GF friend!

Some thoughts from Jessica's perspective:

  * Initially, she felt that there was nothing for her to eat but she
    slowly found that there were lists available of the many GF foods
    and candies she could eat.

  * Sometimes she has to go without snacks at school and this can be
    hard when surprised by non-GF snacks.

  * She realizes that the burden of finding out about snacks at school
    is now on her shoulders and if she fails to tell us about it ahead
    of time, she has to do without.

  * She has learned to cook and bake some GF foods!  She made a great
    German Apple Cake and took it to her German class in school.  (The
    class devoured it.)

  * Most importantly of all, Jes knows that CD is only a part of her.
    Jessica doesn't consider herself a celiac, simply a 14 year old
    girl who just happens to have some diet restrictions.

With Jes now entering high school, we realize that we have most of the
formula down pat.  Home made GF bread for lunches, GF snacks, and a
daughter who is learning to function GF on her own.  Next
step...college!  Yikes.

Parting Words
-------------
I truly feel blessed to have been diagnosed with CD.  First and
foremost the diagnosis allowed me to feel completely healthy for
probably the first time in my life.  Secondly, it allowed me as a
parent to lead the way for my daughter as she was going through the GF
adjustment.  In many ways our path has been easier with Jes because of
my diagnosis.  If I could give any final advice to parents of CD
children it would be to know the diet completely, learn to bake if you
don't already know how, plan and be willing to adapt, but most of all,
smile and enjoy the years you have with your children as they quickly
grow to high school and college aged kids!