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                           Danielle's Story
                           ----------------
                from the pages of "Gluten-Free Living"

    She was a sick infant and as she grew, her illness got worse.
   Danielle was saved just in time.  An alert specialist suspected
    celiac disease, performed the right tests, made the diagnosis
      and sent the family off to follow a gluten-free lifestyle.
    Now Danielle is healthy and strong. She faces a bright future.

Rich and Shelley Gannon knew their younger daughter Danielle was ill.
In fact, as she approached her first birthday, she became
progressively worse.  They were frightened.

Rich and Shelley do not frighten easily.  They have coped with many
things and been around high-powered people most of their lives.  Rich
is quarterback for the National Football League's Oakland Raiders.
Shelley was an All-American gymnast at the University of Minnesota.
They met while Rich was playing for the Minnesota Vikings.  Shelley's
dad was a running back for the Vikings.

What the concerned parents did not know was that Danielle was turning
into a classic case of celiac disease, which is also called gluten
sensitivity.  Celiac disease is a gastrointestinal problem that
involves an abnormal reaction to gluten in food.  When people with
celiac disease eat wheat or other grains that contain gluten, their
bodies react as if the gluten were poison.  The reaction damages the
small intestine, which leads to malabsorption of vital nutrients.  In
essence, celiac disease was causing Danielle to starve.

Celiac disease is difficult to diagnose because the symptoms can be
attributed to many other causes.  Danielle was just an infant, so of
course she couldn't explain.  But Shelley had known for some time that
something must be wrong.  She describes Danielle as a sick baby.  She
cried all the time, never slept and eventually became hyperactive.  On
top of that, she had 10!  ear infections during her first year.
"Danielle is my second child," Shelley says, "so I wasn't a paranoid
mom when I told the doctor how concerned I was about her health."

But the doctor simply didn't believe what Shelley was telling him, and
brushed it off as normal baby stuff.  So she searched elsewhere.  She
consulted a nurse practitioner, tried different formulas, experimented
with different foods, and talked to a holistic doctor.

Meanwhile, Danielle continued to deteriorate.  "She threw up all the
time and used tons of diapers," Shelley says.  Doctors said she
probably had the flu or a virus.  They did every test they could think
of, and switched the failing baby from one diet to another.  Nothing
worked.  The "crisis" stage lasted for about two months, and
eventually the family wound up in the emergency room with a baby who
was starving to death right before their eyes, yet no one recognized
it.  Testing continued to no avail.  "I thought she wasn't going to
make it," Shelley says.  "I prayed every minute."

Two days after Danielle was admitted to the hospital and two months
after it had become clear that something was seriously wrong, David
Ferenci, MD, a pediatric gastroenterologist, was called into the case.
He was the first physician to suspect celiac disease, which is
diagnosed by testing for gluten antibodies and then performing a small
bowel endoscopy when the blood tests are positive.  The endoscopy
allows the physician to look for damage to the small intestine.

Danielle's endoscopy was positive and the Gannons heard the words
celiac disease for the first time.  "We were glad to hear the
diagnosis," Shelly says.  "We thanked God when Dr. Ferenci told us it
could be handled with the diet."

There is no cure for celiac disease, but a diet completely free of
gluten resolves the symptoms.  As long as patients completely avoid
gluten at all times, they stay healthy and normal.  It's an easy
solution that is actually very challenging.

Dr. Ferenci was honest and told Shelley and Rich that he knew very
little about the diet.  The nutritionist they consulted also knew very
little.  Like other celiac parents, the Gannons got their information
in bits and pieces--from other parents and support groups and from
newsletters.

They quickly discovered that the miraculous cure was amazingly
difficult to carry out.  The main source of gluten is wheat, and wheat
is found in many common foods.  Gluten is also found in rye, barley,
spelt, kamut, triticale, and possibly oats.  So nearly all common
cakes, cookies, cereals, pastas, noodles, pretzels, etc., not to
mention pizza, bagels, and beer, contain gluten.  It is also found in
many processed foods and some pharmaceuticals.

When a diagnosis of celiac disease enters a household, shopping for
food and cooking it take on enormous meaning and sense of
responsibility.  Not only must Danielle's food now be totally gluten
free but Shelley also has to be careful so the food Danielle eats is
not contaminated by gluten-containing foods that might be around.

Because of Rich's job, the family has to meet the demanding needs of
the gluten-free diet in two locales.  During the football season, the
Gannons live just outside of Oakland.  In the off season, they return
to Minneapolis.  Shelly describes coping with gluten-free living as a
lot of work, but well worth the price when she considers what the diet
does for Danielle.  When properly carried out, the GF diet is
amazingly restorative and protective.  No gluten.  No problem.

Danielle, now 3, is still not totally able to tell her parents what's
going on inside.  Shelley says she is looking forward to the day when
Danielle can accurately describe how she is feeling.  Meanwhile, like
other celiac parents, Shelley worries.  She says the hardest part is
when she knows Danielle is not feeling well and she has to ask
herself, "Is it gluten?"

Celiac parents also worry when their children are not at home and are
in a situation where they might be fed something that contains gluten.
They become concerned that other adults will not realize the
seriousness of the problem and figure a little bit of gluten won't
hurt.

This means every adult who might come in contact with a celiac child
must be taught about gluten and where it's found.  GF snacks also need
to be available, especially when the child is young.  Danielle's
nursery school has kept a supply of GF treats so there is something on
hand for her when needed.  Shelley says Danielle is learning to ask
whether a food is gluten free before she accepts it.

Despite the dietary frustrations, Danielle is doing fine.  She is
"right on track" in her physical and psychological development.
Shelley describes her daughter as "very active."  "She doesn't like to
sit still for very long," she says, and likes climbing, water play,
swimming and her gymnastics class in California.

"We try not to look on gluten sensitivity as a disease but rather as a
condition," Rich says.  "Danielle's sensitivity to gluten is not going
to go away, so we try to treat her special diet as our 'normal' and we
don't focus on it.  Of course we make sure her diet is taken care of,
but we treat it as absolutely normal.  Overall we try to be positive
and raise our daughters as if they are healthy young kids with a
healthy, bright future ahead of them--which, of course, they are!"

"We don't want to limit Danielle.  We don't want the 'difference' in
her diet to make her feel 'different' from others.  We want her to be
happy."  In this respect, the Gannons are just like any other parents,
gluten-challenged or not!

Rich admits he was frustrated with the medical community during
Danielle's crisis.  He says his football career means he's been
treated by world renowned specialists, which has taught him the
importance of paying attention to details, something that did not
always happen when Danielle began to get sick and as she got sicker.

He also expresses concern about the lack of food labeling that would
make it easier for those with celiac disease to stay gluten-free.
Gluten is rarely listed on a food label as gluten, but it can be
hidden in ingredients such as modified food starch, hydrolyzed
vegetable protein and a long list of other ingredients with
uninformative names.

"We care about this disease and we are trying to do a lot of things to
raise awareness," Rich says.  "We would like the entire country to
know what celiac disease and gluten-free living are all about.  We
don't want other parents to go through what we went through.  We would
like to have doctors think 'celiac disease' when they see a child with
Danielle's symptoms.  And we would like to see our daughter cured--or
at least have an easier time meeting her dietary needs."

To that end, the Gannons are telling their story and doing everything
they can to make people aware of celiac disease.  Awareness and
knowledge will bring about quicker, less traumatic diagnoses.

They would also like the food processing companies and the government
to be aware of the problem and help create clearer labeling on foods
so eating gluten free is less of a challenge.

They hope the general public becomes aware of the problem, so there
are fewer problems when celiac children are away from home, in school
or visiting friends, for example, or when any celiac is traveling,
hospitalized--or hungry!

Rich and Shelley know all of the above will be much easier to attain
when the health care and food processing communities realize how many
American celiacs there really are.  For this reason, they are trying
to raise money to support the Center for Celiac Research (CFCR) at the
University of Maryland.  The CFCR is currently conducting a
multicenter prevalence study that will indicate the number of celiacs
in this country.  Initial results are eye-opening (perhaps as common
as 1 in 150).  Completion of this massive study is the key to making
everything else happen, the Gannons say.

Danielle is thriving and the gluten-free diet has become a way of life
in the Gannon household.  So has activism.  Shelley and Rich are
taking time from their overly busy lives so they can help make celiac
disease better known and support research that will help make life
better for those who are gluten sensitive.  Celiacs across the country
are grateful for their help.

[This article was reprinted with permission from the May/June 2000
issue of "Gluten-Free Living".  Subscriptions are $29 for 1 year (6
issues) or $49 for 2 years (12 issues).  Send a check payable to
"Gluten-Free Living" to PO Box 105, Hastings-on-Hudson, NY 10706]