[IP] Boy, 8, Helps Doctors
From: Denise Guerin
This story makes me wonder how many of us with gastric problems might have
celiac desease. Has anyone tried a gluten free diet to see if it improves their
gastric symptoms or am I being too simplistic in assuming that improvement in GI
Boy, 8, Helps Doctors
3rd-grader's science project key to diagnosing disease
By Chris Jones
June 10, 2003
High-profile physicians and renowned scientists aren't the only researchers
saving lives these days.
Meet 8-year-old Austin Stack of East Northport.
This year, the third-grade scientist helped doctors diagnose himself and his
mother with a disease called celiac through a science fair project monitoring
his Type-1 diabetes.
Celiac is a hereditary disease that triggers an immune reaction to foods such
as wheat and certain grains containing gluten, a protein. The disease, which
slowly destroys the intestinal layer, causing inflammation and progressive loss
of the ability to efficiently absorb food, is often misdiagnosed. It is also
under diagnosed: An estimated 1 in 4,700 Americans have been diagnosed with
celiac disease, according to the National Institutes of Health, but studies
suggest as many as 1 in 250 may have it.
Once sufferers like the Stacks go on a gluten-free diet, the disease goes into
"If it wasn't for Austin," said his mother, Jeannine Tayler-Stack, "we would
have never known that we had the disease," adding that the whole family now
strictly adheres to such an eating regiment.
The discovery began in January when Austin volunteered to do a science project
at Dickinson Avenue Elementary School, and told his parents, "I think something
with diabetes would be good to do."
They agreed, and in the end, it won first place in Brookhaven National
Laboratory's 2003 science fair.
Austin, since age 2, had been plagued with stomach aches and painful bowel
movements. After seeking medical advice, his parents were advised to give him
natural laxatives, supplements and prune juices. "Something was wrong," his
mother said. "I'm no medical expert, but after doing research on my own I knew
what the doctors were saying was wrong."
For years, Austin suffered and doctors labeled his condition as irritable bowel
syndrome -- an ailment for which celiac is often mistaken, medical experts say.
At age 6, he was diagnosed with Type 1 diabetes, and the family believed their
struggle was over. But after a year of regulating his blood sugar level with
insulin, changing his diet and visiting diabetic doctors, he was still in pain.
The Stacks asked their pediatrician, Nina Tomei of the North Shore Medical
Group in Huntington, for help. Tomei said she had a suspicion he was suffering
from celiac disease. The family went back to the diabetic team to have Austin
tested for the disease and were told twice he didn't have the intestinal
"I said, 'if your son is still having pain he probably has the celiac disease
and you should have his original biopsy slide sent to the University of
Maryland's Celiac Research Center,'" Tomei recalled telling the family. Tomei's
5-year-old son, Bryan Reilly, was diagnosed a year ago and since then, she has
diagnosed several of her patients with celiac.
Meanwhile, Austin began to prepare for the science fair. On the nights he ate
wheat or gluten heavy products, he had trouble.
Just as the mild-mannered student was receiving accolades for his project, the
Maryland research center called. The head of the center, Dr. Alessio Fasano,
told the family Austin was in the third stage of the five-stage disease. "Nina
told us Austin had to get the disease from one of us and suggested we all get
tested," Tayler-Stack said. " ... I was floored when I found out it was me."
Fasano, who said, "the extreme result [of celiac] could be intestinal cancer
some people probably die from starvation," told Tayler-Stack her case was scary
because she showed no symptoms.Currently, the youngest Stack, 3-year-old Harris,
is exhibiting signs of the disease. He has been tested and results are pending.
Now that the health puzzle has been solved for Austin and his mother, the
children have had to give up their favorite cereals -- Lucky Charms and Cocoa
Puffs -- for EnviroKidz Organic Peanut Butter Panda Puffs. "That's OK," said Tom
Stack, who, along with their 6-year-old son, Reid, does not have the illness.
"One day Reid and I will go to lunch and eat all the pizza and ice cream we
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