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A View From College
-------------------
by Josh Marks
reprinted from the Dec. 1997 newsletter
of the Westchester Celiac Sprue Support Group
When I was diagnosed with Celiac Disease, I didn't understand exactly
what that meant. I was told, like so many other celiacs, "Oh, you
just have to eliminate gluten from your diet." The doctor made it
sound as if it was no big deal. However, I soon realized that my
assumption was wrong.
I had just turned twenty-one and it was at the beginning of my
sophomore year of college when I found out I had Celiac Disease. As
most college students do, I lived on pizza, bagels, muffins, and
sandwiches. Also, I frequently attended a number of parties where I
enjoyed the beer and grain alcohol. I didn't even realize the extent
to which I had to change my life. The only cooking I ever did was
making eggs on Sunday mornings. Once I found out that everything I
ate contained gluten, I knew that I needed to make some major
adjustments.
First, I had to learn how to cook, which turned out to be pretty easy.
The major adjustment I faced was social situations. At parties and
formal dinners, I found that there was nothing I could eat and no
alcohol I could drink. Now, my mother didn't have too much sympathy
for my inability to digest alcohol, but most college students will
tell you that drinking is a major part of college life. I would feel
very awkward at parties when I had to explain why I had to turn down a
beer. When going to a restaurant on a date, I hated explaining that I
couldn't eat anything on the menu. I became very self conscious and
as a result, I rarely attended any social gatherings. I felt so bad,
that I barely went out at all. In addition, before my disease, I was
accustomed to grabbing a bagel or slice of pizza between classes.
However, after I was diagnosed I wasn't able to do that anymore. In
fact, I would not eat anything all day and just wait until I got back
to my apartment to broil a chicken breast so I could e at something.
My not eating and self-pity lifestyle made things in school much
worse. I would get annoyed and irritated by people and events that
never bothered me before. I became very short tempered and didn't
want to deal with anything or anybody. My grades and class work were
affected. Every time I sat down to study, all I could think about was
how angry I felt. I even stopped attending class because I couldn't
learn anything. The only thing that entered my mind was how hungry I
was and the food I could eat. It was definitely no way to live and
required a change.
My routine of starving myself all day and not going out lasted about
two depressing months. When I was close to going insane, I was forced
to make a decision. I could let this lifelong disease control me or I
could get my act together and control my disease. I made the decision
to get my act together and kick my disease's butt. I learned how to
cook food that I could eat. Also, I would prepare gluten-free
sandwiches and bring them with me to school. When I went to
restaurants, I boldly brought my own bread and cookies. My attendance
at social functions increased and I even found several items that I
could eat or drink. Sometimes, I would even bring my own potato vodka
and share it with everyone. If a lot of my friends were going out, I
would eat something at home first to subside my hunger. Then, with my
friends, I would order something simple like fries or potato skins.
[Make sure there is no cross-contamination in the frying oil from
breaded items--ed.] My situation started to get a lot better.
As a result of my new control over my disease, I became much more
confident. I didn't mind answering questions like "You can't have
bread! What can you possibly eat?" I learned to laugh at these
questions and give a friendly reply. I even realized some positive
things about my situation. Becoming a celiac made me more aware of
nutrition. Ironically, my disease has made me become a healthier
person.
Now, when I am faced with questions about my disease, I answer them
and change the subject. I don't insist on explaining how difficult it
is, and how lucky everyone else is that they can eat all kinds of good
foods. This disease affects a person's everyday life. No one
realizes the role that food plays in his/her life until it is taken
away. I could let myself get depressed over the situation, or I could
accept it and think about other aspects in my life. I decided a long
time ago that in order for me to be happy, I need to face my
circumstances with a positive attitude. When I start getting down
about my disease, I try and concentrate on the good aspects of my life
and, thank God, there always are. If I don't, then my disease will
pollute my life and will make me a bitter person. I definitely don't
want that to happen. Adjusting has been and still is very hard.
Fortunately, as my everyday routine continues, things get much easier.
Recently, I have stopped desiring food I used to enjoy. Bakery goo ds
never enter my mind. Even pizza doesn't seem so good anymore.
Occasionally, I get frustrated and annoyed. When that happens, I just
think that I am a normal human being who has been dealt a certain hand
and I am living with it. Actually, if I may say so, I am doing a damn
good job.
My good friends know that I can't have certain foods, so they have
stopped offering them to me. Sometimes, they even look out for my
diet restrictions, which I take as a sign that they care. Now, when I
go out on a date or even with some friends, I find it to be no big
deal to explain what I can't eat. Actually, I turn things around and
emphasize the food I can eat. I make my situation sound positive
which makes everyone, including myself, feel more comfortable. That
is the most important, for me to be at ease with my situation.
A year ago when I was diagnosed, I never imagined that I could be
handling things the way I do. Now, I see no other way to approach my
situation. I feel a hundred times better than I have in the past four
years. I was able to cure myself from constant episodes of pain and
fatigue and replace them with humor and rice crackers. I know what I
can and can't have and because of it, I feel great. I love living
without pain, and I have so much energy that I sometimes don't know
what to do with all of it. The way I see it, CD all depends on how a
person looks at it. I am able to view it on a positive note only
because I choose it that way. I can't imagine living any other way.
[Josh Marks is an active board member of the Westchester Celiac Sprue
Support Group, and has served as an invaluable source of information
and support to other celiacs, especially those of college age. We
thank Josh for his very honest article.--the Westchester CSSG
editors.]
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