<<Disclaimer: Verify this information before applying it to your situation.>>
Living Gluten-Free
------------------
by Jax Peters Lowell
summarized by Jim Lyles
Jax Peters Lowell is the author of _Against the Grain: The Slightly
Eccentric Guide to Living Well Without Gluten or Wheat_. She was the
first speaker at the "8th Annual Celiac Program for Children and
Adults". This conference, held on November 16, 1996, was put on by
the Gluten-Free Gang and Children's Hospital in Columbus, Ohio. Jax
is a full-time writer of fiction as well as non-fiction. Her first
novel, _Mothers_, was published in 1995. Jax pointed out that she has
no medical credentials at all; her credentials come from living with
the diet since being diagnosed in 1981. What follows are some
highlights from her talk.
Jax calls herself a "recovering celiac". She doesn't say she has
celiac disease (CD), because she is no longer sick. She believes that
is a very important distinction. She said she has a genetic
predisposition towards not taking "no" as an answer. When a problem
arises, she tries to figure it out, learn as much as is possible about
it, fix whatever is fixable, and then accommodate what is not fixable.
She uses this approach not just with CD, but with all of life's
challenges.
One of the goals behind _Against the Grain_ was to get some publicity
for CD. More exposure to the public at large is needed to help get
some dollars for celiac research.
Jax believes that getting better involves more than the physical side
of things. You should of course do as your doctor tells you and take
care of the physical aspects of CD; but there is also an emotional
side: you need to heal emotionally, too. For one thing, you should
talk about what happened to you as much as you can. Tell people your
story. (I got down to "x" pounds, I didn't have the energy to get out
of bed, it took "x" years for me to get diagnosed, I was sent to a
psychiatrist, etc.) Why? Because, at some point you will get tired
of talking about it and will then be ready to move on.
You have to be willing to say that it really bothers you to sit there
and watch someone else eat a bagel that you can't have. Be willing to
admit that you're sad about it; you are going through a grieving
process.
CD is really two diseases: When you are sick (not yet healed), you
need to talk about it. When you are well, then you have the potential
to get sick by eating gluten; so you still have to talk about what
foods you can have because nobody else knows about it.
Once you get past the stage of anger and whining ("why me?"), you move
on to "denial", which is NOT a river in Africa. There is a real
temptation to cheat on the diet. People don't like to talk about
this, but if you don't talk about it, you will cheat. During her
first year after diagnosis, Jax would hide "forbidden food" in her
purse and eat it with sun glasses on to disguise herself. She'd stick
regular cookies in ornamental boxes at Christmas time and feel like
she was getting away with something. But who was she fooling?
Jax made it clear that she does not endorse cheating. Cheating is a
terrible thing to do; it makes you sick and harms your own body. As
you get older and the immune system gets weaker, the cumulative
effects of cheating can cause a lot of problems. But she does endorse
talking about it when you do cheat. For parents of celiacs, she
warned that you must make it "safe" for your celiac child to tell you
that they feel like cheating sometimes. Don't react with alarm and a
lecture about why cheating is bad. Acknowledge those feelings and
help them cope.
When eating out, don't be afraid to talk with the chef. Remember that
chefs are nurturing people; they care about the people that are eating
their food.
Jax has written a children's book entitled _Cupcakes and Tummy Aches_.
Jax read a few pages from the beginning and end of the book to the
audience, and it sounded wonderful! The main character is a
7-year-old girl that wants to be a ballerina, but she's not tall
enough. She doesn't know it, but it is because she has CD. She loves
cupcakes so she eats lots of them to help her grow taller. But of
course these give her tummy aches and eventually make her very sick.
That is when she learns that it is due to CD. So she learns that she
is different, but still very special. The story ends with her parents
getting her a pair of ballerina slippers, and singing and playing
music for her while she twirls and twirls around on her toes. Later,
when she is ready to fall asleep, she lays there thinking of all the
wonderful things that will happen to her someday, to the girl who once
ate cupcakes and got tummy aches. [Before you ask--the book is not
yet available in print; look for it soon.--ed.]
Jax then answered a few questions.
Q: What can I do if a loved one insists on cheating on the GF diet?
A: You can't be a controller who tries to force compliance; then they
will eat gluten just to spite you. (Stupid? Sure, but that's
what people do.) You just have to make it clear that for your own
selfish reasons you want that loved one to be around, that you
care about them and don't want to lose them. Jax tries to be
light-hearted about it. Her husband has a heart condition and
must be on a low-fat diet. But sometimes he sneaks into her
cheese supply. She said she puts her hands on her hips and says,
"You want your angioplasty here or to go?" But you have to
realize that if they choose to cheat, then it is their problem and
not yours.
Q: In your travels have you ever run into any prominent people with
CD, such as senators, publishers, or chairmen?
A: There are rumors about some celebrities, but there seems to be a
hesitancy to step forward and admit it. Jax doesn't know of any
she has met herself. She does agree that finding a "name" with CD
might help make the general population more aware of it, which can
only be good for celiac research, etc.
|
