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:                                                :
:       Excerpts from _The Nutmeg Celiac_        :
:       ---------------------------------        :
: Fall 1999     Phyllis & Manny Strumpf, editors :
:                            Nutmeg Celiac Group :
:                                  30 Lance Lane :
:                        Milford, CT  06460-7519 :
:................................................:

The Celiac Movement:  Jane Trevett, a well-known local, regional, and
national advocate for celiacs, believes that [a major] goal of the
celiac movement is an effort to create more awareness in our
communities and encourage doctors to do preliminary testing so that
more celiacs can be diagnosed earlier.

"The celiac movement is a joint effort by national celiac
organizations, local support groups (including gastroenterologists),
the internet, and celiacs themselves to accomplish this goal.  I have
had Celiac Disease (CD) for 34 years and I am thrilled at the progress
that has been made in many areas such as the availability of
gluten-free (GF) foods, cookbooks, and the ease of travel.  However, I
am still frustrated to hear at many celiac meetings about the length
of time for diagnosis that still exists in the USA," she says.

Jane is one of 2,700 celiacs from throughout the world who go on line
daily to help others without hesitation.  "Someone recently said that
groups such as this are one of the most satisfying proofs that people
care about each other," she notes.

"I have tremendous admiration for the many people who are working
tirelessly to make CD better understood.  I am glad to be part of the
celiac movement to help in whatever way I can.  Bette Hagman said in
one of her talks, 'No one is going to make it better for celiacs more
than other celiacs.'"

                            -=-=-   -=-=-

An Editorial
------------
By the time you read this, Jerry Lewis will have completed another
24-hour telethon for Muscular Dystrophy (MD).  He has made MD a
household word and raised millions of dollars.

When you open your weekly newsmagazine, a photo of Astronaut John
Glenn's wife in a public service ad tells us how she overcame
stuttering.

In a recent news release, Mary Tyler Moore, a lifelong diabetic,
announced a multimillion dollar grant for diabetes research.

Pick up your morning paper.  Watch TV.  Listen to your favorite radio
station.  Scan roadside billboards.  Everywhere you look and listen,
there are celebrities:  professional athletes, Hollywood stars and TV
personalities, plugging their favorite causes.

Our frustration reached its peak when at our local supermarket we saw
prominently displayed a new brand of corn flakes (not gluten-free, of
course) named after a professional football player.  Proceeds from the
sale of Flutie Flakes go toward research into a cure for a childhood
disease affecting Flutie's son.

And how can we forget Connecticut's own Paul Newman whose profits from
his salad dressings and other food items send thousands of seriously
ill kids to camp.

Don't get us wrong.  We think it is commendable that celebrities use
their time, money, energy, and notoriety to help humanity.  Whether
it's because of a personal experience, a desire to give back to the
community, or to gain public relations exposure matters little.  The
bottom line is that we all benefit.

The University of Maryland's Center for Celiac Research confirms there
are more Americans than previously thought who have Celiac Disease
(CD).  That means that as our population increases, so will the number
of celiacs.

We cannot believe, therefore, that there isn't one athlete, star, or
TV personality with CD or whose spouse, sibling, daughter or son isn't
gluten-intolerant.

We must stop hiding at the corner table feeling sorry for ourselves
and scrounging for research dollars from within the celiac community.
We must begin to communicate to as well as with the outside world.
How else will individuals with celiac symptoms know to suspect CD?
How else will physicians know to test for CD?  How many potential
research dollars will continue to go elsewhere because they are being
sought aggressively by other health-related organizations and their
celebrity spokespersons?

As Beth Hillson of the Gluten-Free Pantry noted in her comments above,
we have a lot to be thankful for.  We eat right, we are healthy, and
we do not suffer from more serious illness that requires special
treatment or pills.  When my own gastroenterologist diagnosed me four
years ago, he said, "I've got good news.  You're a celiac.  It could
have been a lot worse."

Residents of Danbury and New Haven, Detroit and Los Angeles, New York
and Denver, Omaha and Pittsburgh, and in every other town and city in
the U.S.  must stand up and be counted....and represented nationally.
We need someone with name recognition to make the public aware of CD
and raise funds to advance research at universities such as the
University of Maryland and Iowa and at Baylor.  We need someone to
whom the food companies will listen.  Those companies who depend upon
the bottom line must be made to realize that by expanding their
gluten-free product lines, they will benefit themselves and their
shareholders as well as celiacs.

We need a public figure to make our friends, families, shopkeepers,
neighbors, elected officials, and prospective contributors aware of
our gluten concerns so they will be more tolerant of our gluten
intolerance; comfortable and understanding of our "peculiar eating
habits;" and generous with donations for research.

Where is that spokesperson?  It's time CSA and the other national
organizations and local support groups aggressively seek one or more.
What do we have to lose?

We have heard the excuse that doctors can't violate patient
confidences by asking them to help.  We don't buy that.  Certainly the
patient can say no.  Ours is not a social disease that we dread
talking about in public due to embarrassment.  It is a perfectly
appropriate disease to acknowledge.  We do it every time we dine or
shop for food.  My professional career brings me in contact with
famous and influential people, with many of whom I share lunch or a
"nosh."  I'm candid about what I can and cannot eat.  CD to me has
never been a negative issue.  It should not be.

It's time we, like so many other worthwhile causes, found a national
spokesperson.  It's time we stop feeling sorry for ourselves and stop
confining our celiac conversations to our support groups.  The growing
numbers of celiacs warrants a public figure to speak on our behalf.

Perhaps Helen Keller expressed it best:  "Science may have found a
cure for most evils but it has found no remedy for the worst of them
all--apathy of human beings."--Manny Strumpf