Date:    Mon, 17 Mar 2003 16:23:53 -0600
From:    "Julie M. Evans" <julie@...>
Subject: celiac disease; article in Washinginton Post


>BY DAVID BROWN
>THE WASHINGTON POST
>
>    WASHINGTON -- By the time Alyson and Joshua Weinberg found out what was
wrong with their daughter Josie, the toddler was too weak to walk across the
room. She had sunken cheeks and a swollen belly, and she was vomiting
frequently. She was clingy and scared, and her parents were petrified. No one in
a suburban office full of pediatricians recognized what was wrong with her.

"There was something that was telling me this kid is literally dying and we need
to do something about it, and nobody is listening," Alyson Weinberg recalled.

It wasn't until they took their daughter to a pediatric gastroenterologist in
Washington that they learned what was making her so sick: the food that was
supposed to nourish her. Josie had celiac disease, a chronic ailment caused by
an immune reaction to gluten, a protein found in wheat and several other grains.

 That disease, it is becoming clear, is far more common than doctors have been
taught. New research is revealing that celiac disease may be one of the most
common genetic diseases, affecting perhaps as many as 2 million Americans. A
national survey published last month, for example, estimates that one in 133
Americans has it.=20

In Josie's case, she stopped throwing up within three days of being taken off
food containing gluten. Within three weeks, she was running around and singing.
Over the next six months, she grew 4 inches.=20

"It was like someone had given us our child back," Alyson Weinberg said
recently.
-------------------------------------------------------------

Often Misdiagnosed: The Weinbergs' experience is an extreme example of an
indisputable fact of American medicine: Most doctors miss the diagnosis of
celiac disease. It's now clear that the textbook description of this
once-obscure ailment is woefully incomplete and describes only a minority of
cases. Below the tip of the so-called celiac iceberg is a diverse world of
illness that may include thousands of people suffering from various, seemingly
unrelated conditions, such as anemia, osteoporosis, infertility, irritable bowel
syndrome and chronic fatigue.

"We were taught in another way. We were looking in the wrong direction. We were
not putting our face under the water to see the iceberg," said Alessio Fasano, a
gastroenterologist at the University of Maryland School of Medicine in
Baltimore.=20

Fasano and his colleagues are publishing the survey that estimates one in 133
Americans has celiac disease. About 40 percent of the afflicted report no
symptoms, although the disease may be having inapparent effects, such as the
loss of bone mass, subtle changes in mood and infertility. In close relatives of
people with celiac disease, the ailment was especially common, with a prevalence
of one in 22, =
>according to the paper, which appeared in the Archives of Internal Medicine.

 The rapid expansion of a disease's prevalence is not a new phenomenon, but the
rise in celiac disease is virtually without precedent.

A generation ago, physicians were taught the disease was so rare that a
practitioner might go a lifetime without seeing a case. In 1993, researchers at
Children's Hospital in Buffalo, N.Y., published a study estimating celiac
disease's prevalence to be 1.3 cases per 10,000 children. Mayo Clinic
researchers the next year measured a rate of 1.1 cases per 5,000 people in the
Minnesota population the clinic serves. Fasano's work suggests that celiac
disease is 50 times more common than that.

The new estimate doesn't come from a rigorous epidemiological study, but from a
survey of several heterogeneous groups: blood donors, relatives of people with
celiac disease, West Virginia schoolchildren and routine medical clinic
patients. In all, 13,000 people from 32 states were tested. Despite these
limitations, many experts believe the new estimate is probably close.

Symptoms: Celiac disease is characterized by chronic inflammation of the upper
portion of the small intestine. This occurs in response to gluten and similar
proteins found in wheat, rye and barley. In classical cases, this leads to
vomiting and diarrhea in young children soon after cereals are introduced in the
diet. What's now clear is that people can develop celiac disease throughout life
and that they often have few, if any, intestinal symptoms.=20

The symptoms they do have often arise from deficiencies of nutrients absorbed in
the affected part of the intestine, such as iron, calcium and fat-soluble
vitamins. Iron-deficiency anemia is the most common "clinical presentation" of
adults with celiac disease. In Fasano's survey, 30 percent of people in which
the disease was newly diagnosed had joint pain. One quarter had fatigue. Six
percent had osteoporosis.

Celiac disease is diagnosed by testing for three antibodies --anti-gliadin,
anti-endomysial and anti-tissue transglutaminase -- that are present when an
affected person is exposed to gluten but disappear when the offending grains are
no longer consumed. Most physicians strongly recommend that the intestine be
viewed and biopsied through a fiber-optic endoscope to confirm the diagnosis
before a person embarks on a gluten-free diet, which is hard to follow for a
lifetime.=20

 Despite its apparent commonness, there's little support for populationwide
screening for celiac disease. Because the ailment can arise throughout life,
it's not obvious at what age testing would be appropriate or cost-effective. In
Italy, mandatory testing for 6-year-olds was abandoned after several years
because a cost-benefit analysis didn't justify it and it was difficult to
persuade Italian parents to put asymptomatic children on a diet that would ban
pasta for life.

It's also unknown whether people without symptoms actually benefit from the
strict diet. A small study from Finland published last year hints they may.

Researchers there compared two groups of people with celiac disease. Diagnoses
were made in members of one group because they had symptoms. Members of the
other were found only when they were screened for the disease after it was
diagnosed in a symptomatic relative. After a year on a gluten-free diet, both
groups reported significant improvements in psychological well-being and
gastrointestinal complaints.

What no one doubts is that doctors should think of celiac disease more often
than they do. A survey of 1,600 people in celiac support groups in the United
States found that a person's symptoms were present for 11 years before the
disease was identified.

"It usually takes years to change the practice of medicine unless it's a real
breakthrough," said Stephen James, head of digestive-diseases research at the
National Institutes of Health. "And part of that occurs by educating the public.
More and more diagnoses today are being made because the patient says, 'Don't
you think I might have this or that?' "


******************************************
Julie Evans, M.Ag.
Certified Irlen Screener
502 Riverside Dr. NE
St. Cloud, MN  56304
320-251-7493
julie@...
www.ReadingAndLight.com
Irlen Syndrome can include problems with: reading (blurring, etc.), headaches,
eyestrain, light sensitivity, attention
~~~~~~~~~~~~~~~~~~~~~
>End of NAET-L Digest - 16 Mar 2003 to 17 Mar 2003 (#2003-70)
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