Deciphering A Common Disease

(CBS)  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.

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More information on celiac is available from the following organizations:

Columbia University

University of Maryland Center for Celiac Research

University of Chicago

Mayo Clinic

National Institutes of Health

NIH

Celiac Disease Foundation

Celiac Sprue Association

Gluten Intolerance Group
Dr. Jon LaPook

[jimc52]

I will also put one main responsibility on food sales and marketing organizations who use the label as a marketing tool and often play with the wording and definition of ingredients. The FDA needs to place stricter guidelines on food sales and marketing so that the ingredient statement is not a marketing tool. All that is needed is to follow the Code of Federal Regulations regarding food ingredient declaration and nothing more. It may come down to the responsibility of food retailers to provide customers with extended food safety information via computer systems. This could be done, but retailers don't want to spend the money. So there are many other players in food marketing besides the manufacturer's themselves.
On the whole, I believe the food industry has done an EXCELLENT job of addressing food safety issues. Now, it is up to the rest of the food chain, including the consumer, to be responsible.

[jimc52]

As a food technologist involved for over 25 years in the food industry, I have delt with the concerns of Celiac affected individuals as well as many other food sensitivity issues, including sulfite and lactose intollerances and food allergen issues. The FDA has adequately addressed many of these issues by mandating that ingredients on label statements be made clear to consumers. One of the issues is "hidden" ingredients as sub-components of other ingredients. FDA does NOT have adquate staffing to supervise the millions of labels out there and relies on trained food technologists such as myself to provide clear, concise and complete ingredient statements. I wish to say that we food professionals do our utmost in ensuring complete ingredient declaration and we are just as concerned for the consumer as the consumer is (since we too are consumers). The other half of the responsibility lies with the the medical profession and the consumers, in education and training the consumer in which foods present a hazard. The consumer is ultimately responsible for READING AND UNDERSTANDING every label for every product they purchase. No label can possibly contain all the food safety information necessary for consumers because of label size.

[emaegf]

1 in 100 chance is not rare and keep in mind that Celic is the 3rd most undiagnosed disease in the US. With 3 million suffers and only 90,000 diagnosed this disease is not that rare. Just rarely talked about but commonly suffered from.

[lafatea]

The odds of suffering from a rare disorder is, well, rare. However there are so many rare diseases that the chances of any one person coming down with one of them is pretty good.