Celiac is a true life changing disease. It effects the whole family. It curtails social functions.
The hardest part - usually the damage has already been done by the time this disease is found.
Since IBS or Irritable Bowel Syndrome is so much in the news, quite often people think they are suffering from
IBS and do not see a physician for the possibility of Celiac disease.
'Good' food is bad for some
By Marcela RojasEleven-year-old Eileen Spreitzer takes a break from making
Brazilian cheese balls to think about the foods she misses most.
THE JOURNAL NEWS
(Original publication: September 9, 2003)
"I miss the donut shop, hamburgers and my grandmother's sugar cake," she says. Her younger
sisters, Anna, 9 and Laura, 7, are too young to remember what those foods taste like. They laugh when
they think about how as Girl Scouts they sell cookies they've never been able to eat.
"People ask us what the best cookies are and we can't answer, " says Laura. "They all look
good to us."
The Spreitzer sisters, who live in Croton-on-Hudson, can find humor in what many people take
for granted, because quite simply, their lives depend on it. In 1998, the three girls, along with their
father, Michael Spreitzer, were diagnosed with celiac disease, a digestive disorder triggered by the
ingestion of wheat, rye, barley, triticale, (a cross of wheat and rye) and possibly oats.
The protein found in these grains, known as gluten, damages the small intestines of a person
with celiac disease. Specifically, villi -tiny-hair like projections in the small intestines - eventually
shrink or disappear following he consumption of gluten-based foods. Without villi, the body is unable to
absorb nutrients into the bloodstream.
If left untreated, persons with celiac disease may develop dire health consequences,
including intestinal lymphoma and other forms of cancer, infertility and osteoporosis.
Upon diagnosis, Michael Spreitzer, then 39, discovered his villi had completely atrophied.
He barely had any symptoms and only tested for the disease after his daughter, Laura tested positive at
"I thought I had regular gastrointestinal problems like everyone else," he says.
Unfortunately, Spreitzer is not alone. Many patients are asymptomatic for years, with the
disease becoming active after surgery, viral infection, severe emotional stress, or pregnancy and
Others, however, may experience chronic diarrhea, abdominal cramping, tingling numbness in
hands and feet and/or anemia. Infants may exhibit growth failure, vomiting, a bloated abdomen and
behavioral changes. To develop celiac disease, a person must be genetically predisposed to it.
Once considered a rare disease, physicians are now finding the disease more common. A recent
study by the University of Maryland screened more than 13,000 people in 32 states and found that 1 out of
133 Americans may have celiac disease. Approximately, 2.1 million Americans currently have the disease,
also known as celiac sprue or gluten sensitive enteropathy.
"The rate of diagnosis is going up in this country because physicians are becoming more
aware of it," says Dr. Peter Green, director of the Celiac Disease Center at Columbia-Presbyterian
Medical Center. "Physicians were taught that this disease is rare, so it could take up to 11 years for a
person to get diagnosed. The most common diagnosis these people would get is irritable bowel
Green says he sees about 10 new patients a week with celiac disease at the center, which
opened two years ago at the urging of White Plains resident Sue Goldstein. Goldstein was diagnosed with
the disease in 1991 some time after discovering she had anemia. Diagnosis is confirmed after a blood test
is performed and a biopsy taken from the small intestine. Goldstein subsequently found out she also had
suffered bone loss as a result of the disease.
In 1992, Goldstein started the Westchester Celiac Sprue Support Group from her living room.
Today, the group has swelled to more than 400 members and meets every other month at Phelps Memorial
Hospital Center in Sleepy Hollow. The meetings typically include a featured speaker and vendors of
Leading a gluten-free diet is difficult. Gluten can be found in such unlikely products as
soy sauce, mayonnaise, chicken broth, salad dressings, lipstick and medicine. Cross-contamination from
foods cooked in ovens and toasters that have had gluten-based products prepared in them is also a huge
"It's not as simple as taking the croutons off a salad. You have to make a whole new salad,"
says Pat MacGregor, a Somers resident and support group member. "Research shows that it takes ingesting
less than one-eighth of a teaspoon of flour per month to cause physical damage to the
Last year, MacGregor started the Gluten-Free Restaurant Awareness Program. Participating
restaurants are provided with gluten-free-diet reference materials, meal-preparation guidelines, and
sources for gluten-free foods. So far, 18 area restaurants have signed on, including Gedney's Grille in
White Plains, Restaurant Luna in Mount Kisco and Maud's Tavern in Hastings-on-Hudson. MacGregor says a
pilot phase for national expansion is underway.
"I had people calling me telling me they hadn't eaten out since they were diagnosed 10 years
ago," says MacGregor. "This is a way to connect all of us together, so that we can travel, go out with
friends, enjoy a social event without spending all the time talking to waiters and worrying."
Chris Spreitzer is thrilled at the prospect. While she herself does not have celiac disease,
she has spent the last several years cooking and making sure her family follows healthy, gluten-free
diets. Her cupboards are filled with various bean flours, xantham gum, potato starch and tapioca flour to
make loaves of bread and other gluten-free foods.
"I call it the tower of flour power," says Chris, who chose to home school her daughters in
an effort to keep gluten contamination at a minimum. "Celiac disease is a condition that affects the
There is no cure for celiac disease and no medications to treat it. The only way to avoid
complications and health risks is to adhere to a gluten-free diet. But the future does carry
"There is research underway examining the patho-physiology of the immune damage that occurs
in celiac disease," Green says. "Knowledge of the mechanism of the damage will allow for innovative
therapies that may be able to block or prevent the damage caused by gluten."