Celiac is one of the most common of diseases — in fact, one out of every 100 Americans has it — yet many don't know they have it. Only 5 percent of cases are diagnosed properly.
Detection is important because, left untreated, celiac can lead to a variety of health problems, reports CBS News medical correspondent Dr. Jon LaPook.
Not so long ago, the Teitelbaum family all were suffering from a variety of nagging health problems.
Rory had severe migraines; Bruce had a chronic upset stomach; and Sandy had osteoporosis. But it wasn't until little Emma became seriously ill that the search for her diagnosis led to a startling discovery: They all had the same disease.
Six years ago, Emma was severely underweight, unable to keep food down — and no doctor knew why.
"She was no longer walking," said her mother, Rory. "No tears anymore from crying, so I guess she was just so dehydrated, and she was in constant pain — tummy ache, tummy ache constantly."
At age 2, having dropped from 25 to only 16 pounds, Emma became limp and was rushed to the emergency room.
"They said, 'Your child is so severely malnourished,' — and I'm quoting this and this is the honest truth — 'if you had waited 24 hours she would have been dead,'" Rory said.
After pouring over medical books on her own, Rory pushed the doctors to give her daughter the blood test for celiac disease — a disorder triggered by eating foods containing gluten.
"Gluten is the protein mainly that's in wheat and other grains such as rye and barley," said Dr. Peter Green, director of the Celiac Center at Columbia University.
"It's very common. Actually, it's considered that it represents 1 percent of the population," Green said.
In patients with celiac, gluten causes a severe immune reaction. That damages the intestinal lining and prevents nutrients from getting into the bloodstream.
"Primarily it affects the intestines, but it can affect any organ in the body," said Green.
All kinds of disorders are linked to celiac disease: iron deficiency, osteoporosis, infertility, upset stomach, even neurological problems.
It's also hereditary. After Emma tested positive, her family did, too. The mystery of their ailments was solved.
All it took to alleviate their symptoms was a gluten-free diet.
There are numerous products on the market for people with celiac disease — even stores devoted entirely to gluten-free products. Asked if there was anything she wanted that she couldn't buy in a gluten-free store, Emma shook her head no.
For her family, Emma turned out to be the canary in the coal mine.
The reason so many people — close to 3 million — have no idea they have the disease is because celiac disease has not been on doctors' radars for very long. The screening blood tests have only been around for 10 to 15 years.
Doctors used to be taught that celiac disease was a very rare condition and caused severe gastrointestinal symptoms. Now doctors know that it's somewhat common and can cause all sorts of subtle symptoms that don't even involve the belly.
Although 99 percent of Americans don't have the disease, a person shouldn't be afraid to raise the possibility with a doctor and consider testing if there are unexplained gastrointestinal symptoms, if there is already a diagnosis of irritable bowel syndrome, or if the person has any of the nongastrointestinal symptoms associated with celiac disease, which include not only migraines, infertility and osteoporosis, but also short stature, and even recurrent miscarriages.
More information on celiac is available from the following organizations:
Gluten Intolerance Group
Dr. Jon LaPook