Celiac Sprue Disease Can be Fatal

August 6, 2001

This is a really interesting and sobering article explaining how celiac sprue

disease, categorized as a multi-system auto-immune disease, can cause a

higher rate of mortality, especially if misdiagnosed.

Not to alarm anyone, but some post-ops have had nasty experience with this

disease. I do not think it is 'caused' by BPD/DS and perhaps earlier

symptoms were pre-operatively misdiagnosed as IBS or something (and this does

NOT mean every person with IBS really has celiac sprue!). However, for those

who are allergic to gluten, here's some info:

http://www.healthscoutnews.com/080601rate.htm

The Internet's #1 Provider of Consumer Health News www.healthscoutnews.com

Death Rate Soars With Celiac Disease

It's double that of people who don't have the gastrointestinal disorder

By Neil Sherman

HealthScoutNews Reporter

MONDAY, Aug. 6 (HealthScoutNews) -- People with celiac disease have twice the

death rate of those without the intestinal disorder, and the rate rises for

those not diagnosed soon enough, a new study says.

Early diagnosis of the disease is essential, researchers say, and so is a

gluten-free diet.

Celiac disease is an autoimmune disorder that is often undetected or

misdiagnosed in the United States. People who have the disease are allergic

to gluten, a natural protein in wheat, rye, barley and possibly oats. Eating

these foods can cause severe bouts of diarrhea, cramping and other

gastrointestinal problems.

" The fact that the mortality rates are different for celiac patients has not

been generally known before this, " says Elaine Monarch, executive director of

the Celiac Disease Foundation in Studio City, Calif. " This is a nice-size

study with well over 1,000 patients who have been studied for a very long

period of time, so this is a very viable and important effort. "

The study was done by two Italian researchers, Giovanni Corrao, a professor

of statistics at the University of Milan-Bicocca, and Dr. Gino o

Corazza, a gastroenterologist at the University of Pavia. They followed 1,072

patients who were diagnosed with celiac disease between 1962 and 1994 as well

as more than 3,000 of their first-degree relatives. They then compared the

number of deaths through 1998 with the expected mortality rate of the general

population.

They found that 53 of the celiac patients had died, compared to an expected

mortality rate of 25 to 29. A significant number of the deaths occurred

within three years of diagnosis, the researchers say, or among those who did

not stick to a strict gluten-free diet. The findings were published in the

Aug. 4 issue of The Lancet.

" They followed the first-degree relatives because it is well known that

one-in-12 relatives of a celiac disease patient will have the disease, " says

one celiac disease expert, Dr. Karoly Horvath, the director of the Pediatric

Gastrointestinal & Nutrition Laboratory at the University of land in

Baltimore. " And it's also known that a lot of these relatives are

undiagnosed. "

People with this disease must stay on gluten-free diets or risk damaging

their small intestine and losing the ability to absorb nutrients. The study

found that the death rate for those who failed to stick to a gluten-free diet

was six times higher than for those who had.

An estimated one-in-4 ,700 Americans has been diagnosed with celiac disease.

But recent studies suggest that the number is closer to one-in-250 persons,

according to the National Institute of Diabetes and Digestive and Kidney

Diseases (NIDDK). Although it is the most commonly diagnosed genetic disease

in Europe, the disease is rarely diagnosed in African, Chinese, and Japanese

people.

" Most adults are misdiagnosed for years, or they are diagnosed with irritable

bowel and then years later, their doctor might stumble on celiac disease, "

Monarch says.

" It's now considered an autoimmune disease, a multi-system -- that means

intestinal tract, liver, kidneys -- multi-condition disorder, " she explains.

" And doctors in the United States don't look for or test for celiac disease.

They will test for all the other gastrointestinal disorders, but no one looks

for celiac disease. "

Often the disease has no symptoms, Karoly says. " What happens with celiac

disease is that it progresses very slowly. It's the first part of the 20 feet

of intestine that absorbs nutrients and the disease progresses slowly down

the length of the intestine. And if the lower intestine can compensate, which

it does for a while, then there's no evident symptoms. "

The study found the death rate was 2.6 times higher among those whose

diagnosis was delayed for a year, and 3.8 times higher for those who weren't

diagnosed for 10 years.

" The message in this study is that the more delayed the diagnosis of the

disease, the more increased the mortality rate, " Karoly says. " And there was

a perception in the medical community in the U.S. that there was no such

thing as celiac disease in this country, though that's changing now. "

" We did a survey in the mid-90's asking celiac patients when they had their

first symptoms and when they were diagnosed with the disease, " Karoly

explains. " The gap was 12 years. The problem is that, while using the

screening techniques for celiac disease is quite routine in Europe, it has

yet to be recognized as widely in the U.S. "

What To Do

For more information on celiac disease, see the Celiac Disease Foundation or

the National Institute of Diabetes and Digestive and Kidney Diseases.

August 6, 2001