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: Excerpts from the Westchester CS Support Group :
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: newsletter: Feb. 1999 Leslie Elsner and Sue Goldstein, editors :
: newsletter: Oct. 1998 9 Salem Place :
: White Plains, NY 10605 :
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When You're a Teen, by Jennifer Griffin
--------------------------------------
Shortly after celebrating my Sweet Sixteen, I was diagnosed with
celiac disease (CD). At first, I was so relieved that the doctors
found out what was wrong with me. After months of feeling sick, the
doctors finally knew what I was suffering from. To be honest with
you, I was so happy that they were actually going to take me
seriously, after months of telling me that nothing was wrong with me.
I had no idea, though, of the long road to recovery that was ahead of
me.
When my doctor told me that I had CD, he didn't tell me of the
feelings of isolation I would have following the diagnosis. I think
these feelings were intensified because of my age. As a teenage
celiac, I often feel out of the loop. The trips to McDonald's and the
high school cafeteria often remind me that I am "different" than most
teenagers, and leave my mouth watering. The strange looks I receive
when a waiter puts a salad down on my plate, when the rest of my
friends are eating hamburgers and fries, hurt my feelings.
Now that I am beginning the college search, CD is becoming a larger
part of my life, if you can even imagine that being possible. When I
am looking into a school it is apparent that I am different than other
high school juniors. Most teenagers ask about the social life when
they visit college campuses. Not me. I ask if on-campus apartments
are available.
Although my diagnosis was only ten months ago, I have come to realize
that a celiac has to be assertive. When you go to a restaurant, you
have to make sure that the cook knows what gluten is. Being a
teenager, it's often difficult to get people to take you seriously. I
have often received nasty looks when I insist that the hamburger
doesn't touch the hamburger bun. What the waitress or waiter doesn't
understand is that I'm keeping myself from getting sick, not just
being difficult.
I think having a teenage support group would be extremely beneficial.
We could talk to people our own age about the feelings we're having,
certain circumstances we've been in, and could learn of helpful tips
that would be useful in our lifestyle. Personally, I would love to
hear some advice from people my own age about how to make the feelings
of isolation less severe. My e-mail address is <[log in to unmask]>.
-=-=- -=-=-
Study: Body Mass in Celiacs<3>
-------------------------------
Dr. Dickey and Shelagh Bodkin noticed that few of their new patients
with CD were obviously malnourished. They conducted a prospective
study of body mass index to investigate further. The study suggests
that a minority of patients with villous atrophy fit the
obviously-malnourished stereotype and that the possibility of CD
should not be discounted in overweight patients. Many patients with
gluten sensitivity have less severe small bowel damage<4> and may be
even less likely to be underweight.
-=-=- -=-=-
Doing Disney World Gluten-Free, by Donna Griffin
------------------------------------------------
When we first made vacation plans to go to Disney World, our biggest
dilemma was whether to drive to Orlando and save ourselves some money,
or to fly and splurge a little. However, several months later our
just "sweet sixteen" year old daughter, Jennifer, was diagnosed with
celiac disease. Suddenly, the dilemma became whether to go at all!
As parents of a newly-diagnosed celiac, we had our own issues to deal
with, and after many months of Jennifer being ill, we were all
emotionally drained. As her mom, I was determined to show Jenn (and
frankly myself as well) that her life would be "normal" even without
gluten. So began Jennifer's first sojourn as a celiac.
Our first step was to call the Celiacs of Orlando support group. They
were very helpful and suggested that I contact the executive chefs at
each of the theme parks. I was still nave enough to think that
someone at the central reservations number at Disney would surely have
these phone numbers available. After several phone calls, I finally
became aware of a special requests reservationist by the name of
"Linda" at 407-939-7807, who magically (no pun intended) began to make
things happen. She arranged for a refrigerator to be in the room at
no extra charge; provided a brand new, still-in-the-box-unopened,
toaster; and assisted me in making special gluten-free/lactose-free
(GF/LF) meal reservations sixty days in advance, at full-service
Disney restaurants. Perhaps most importantly, Linda provided me with
the names and numbers of the (mysterious) executive chefs.
She also e-mailed the concierge at the Disney resort where we were
staying and advised them that they needed to get some GF/LF items in
stock. This was not in place when we arrived, so I made an unhappy
Mouseketeer phone call, and shortly thereafter, someone from Guest
Relations at the resort itself went to "Chamberlain's" and brought GF
waffles, cookies, and Lactaid milk directly to our room. So now
everything seemed to be in place. Well, you know what they say about
the best laid plans...
As luck would have it, there was a lightning strike in central Florida
the day we arrived, resulting in no natural gas for two days. This
became an excuse at several locations, and a really good way to get me
fired up, with or without the gas! I made an early morning call to
"Brenda", the executive chef at the Magic Kingdom at 407-824-5967, who
seemed genuinely upset at Jennifer's circumstance. Thankfully, the
gas crisis was also over at this point. She e-mailed all of the
remaining restaurants, even if they were in Epcot or MGM, putting them
on a sort of "alert". Ultimately, this led to chefs personally
contacting either Jennifer or myself and pre-ordering her meal.
Even after this, there were still some rough spots, but good help was
available. Marianne Hunnell (407-560-1238, pager 407-934-1180), the
executive chef at MGM, was very helpful after Brenda's contact with
her. She had done some work with the celiac support group in Orlando,
and knew enough to try to coordinate Jennifer's meals at MGM so that
there was some variety. Chef "Wendy" at the Prime Time Caf was
especially thoughtful in her service. Although there is an executive
chef at Epcot (407-560-7517), the communication was weak and we had a
less than pleasant experience arranging for a much-awaited GF/LF
Mexican meal.
Ironically, the restaurant that was the most accommodating had the
least amount of notice, and was the only place Jennifer chose to go to
more than once: Spoodles on the Disney Boardwalk. They have a chef
by the name of "Damian" who really went out of his way to make a
special dinner and GF/LF fruit cobbler for dessert. Magic Kingdom
restaurants also deserve some accolades: Cinderella's Royal Table
served Jennifer a GF/LF breakfast fit for a queen, and someone at
Tony's Town Square high-tailed it over to Adventureland to get a Dole
Whip for dessert (there are two types; the one with no ice cream is
GF/LF....yes, I called Dole beforehand at 800-232-8888).
Before I leave the Magic Kingdom, some GF trivia: The french fries at
Casey's at the end of Main Street are GF, as is the Magic Kingdom
popcorn; and there is GF ice cream at the Cone Shop on Main Street.
(Several of the full service restaurants had either Rice Dream or
Tofutti on hand for us. [Editor's note: It is our understanding that
Rice Dream is NOT GF, due to processing that is done with barley
enzymes, even though the ingredient label reads okay.])
My best advice would be always to speak directly to the chef, have
some emergency rations on hand just in case, and consider a condo or
room with a kitchenette!
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