Grain pain: coping with celiac disease

http://www.healthsentinel.com/news.p...rint_list_item

Darla Carter, "Grain pain: coping with celiac disease",
Courier-Journal Louisville, Kentucky, September 9, 2004,
Link: http://www.courier-journal.com/featu...0909-9078.html

Marge Johannemann was having dinner one night when her stomach began
to swell. Soon, pains started to hit her below her sternum and she
began vomiting.

"My husband came home from down the street, talking to a neighbor, and
here I am lying on the bathroom floor in a fetal position, I'm in such
pain," said Johannemann, 61, of Louisville.

Medical personnel initially thought she had a bad case of acid reflux,
but tests showed that she actually had celiac disease, whose sufferers
can't tolerate gluten, a component of wheat, barley and rye.

"I thought I was the only living person in the whole world that had
this problem because I was told it was rare," said Johannemann, who
was diagnosed 10 years ago.

Now, there's a growing realization that the condition, also known as
celiac sprue, isn't that rare at all.

An independent consensus panel convened by the National Institutes of
Health issued a statement this summer acknowledging that the disease
is much more common than once thought and that it's often overlooked.

About "1 in 130 people in the country have this ..., which is a
tremendous amount of patients, many of which are going undiagnosed,"
said Dr. Edward Adler, a Louisville gastroenterologist and fellow of
the American College of Gastroenterology.

In fact, the disease may affect as many as 3 million Americans — up to
1 percent of the population — which is 10 times higher than previous
estimates, according to the NIH.

The Children's Digestive Health and Nutrition Foundation and the North
American Society for Pediatric Gastroenterology, Hepatology and
Nutrition have launched a joint campaign to try to draw attention to
the disease. They want to make sure it's not overlooked by doctors and
the public.

Some physicians who treat adults are concerned too.

"It's a very important thing for me and all of the other
gastroenterologists in the country, and we're trying to make headway
as far as educating both the physicians and (the) lay public alike, so
that they're more aware of (patients') symptoms and therefore can see
a physician and, hopefully, get diagnosed in a timely fashion," Adler
said.

Previously diagnosed celiac disease patients also may benefit. The
more awareness there is, "the more that manufacturers are pressured to
provide foods that people with celiac can eat," said Louisvillian
Laurie Grimes, whose daughter, Ellie, 9, has celiac disease.

When people have celiac disease, the body perceives proteins in
certain grains as foreign invaders and produces antibodies to fight
them, said Cynthia Kupper, executive director of the Gluten
Intolerance Group of North America. The small intestine becomes
damaged, and the person has difficulty absorbing nutrients from food.

When Ellie Grimes was diagnosed at 21 months old, "she had a
completely distended belly, but her arms and legs were just tiny
little sticks — she looked like a malnourished child," her mother
said. And because of the disease, "that's what she was."

Now that gluten is out of her diet, "she's the picture of health,"
Laurie Grimes said. "She's quite robust and athletic and very
healthy."

Usually, the damage to the intestine is "totally reversible on a
gluten-free diet," Adler said. It may take up to a year to occur, but
patients generally will notice a difference within weeks of avoiding
gluten-containing foods, he said, "and it's really a remarkable
change."

Typically, the condition would first be picked up by a primary-care
physician who would then refer the patient to a gastroenterologist,
Adler said.

"They're the first ones to see the patients, and they're the ones that
would need to be thinking of celiac disease in patients, particularly
with atypical symptoms, and to screen them," Adler said.

Some doctors may not be looking for the condition because "for years
people were taught in medical school that celiac disease was uncommon,
that it characteristically presented with ... classic symptoms of
malabsorption in which patients don't absorb the proper nutrients,
(and) subsequently develop symptoms, such as diarrhea, abdominal pain
(and) weight loss," Adler said.

But now it's thought that the disease presents itself in an atypical
way most of the time, Adler said. For instance, a patient may come in
with unexplained iron-deficiency anemia, fatigue, depression, lactose
intolerance, neurological problems, migraine headaches, osteoporosis
or osteopenia (bone loss), he said.

Also, there are several autoimmune diseases that are associated with
celiac disease, so a patient may come in with poorly controlled
diabetes or unexplained hypothyroidism, Adler said.

Though the disease is more prevalent in whites than nonwhites, it's
starting to be seen "across the board," he said, including in blacks
and people from India.

The condition, which occurs in people who are genetically predisposed,
can be fatal if patients develop significant complications. Also,
patients have an increased incidence of certain tumors, such as rare
lymphomas of the small bowel, Adler said.

For women, there's also an increased risk of spontaneous abortions,
for having low birth-weight babies and infertility, said Dr. Ivor
Hill, professor of pediatrics and internal medicine at Wake Forest
University School of Medicine.

And children can have stunted growth, "so it's important to diagnose
it before they go through puberty and reach their growth potential,"
said Hill, who's also chief of pediatric gastroenterology and
nutrition.

Getting diagnosed typically involves a blood test and a
small-intestinal biopsy that is done under sedation.

The biopsy is "an extremely low-risk procedure, and it gives us a firm
diagnosis, and only on that basis can (doctors) really make firm
recommendations as to what patients should do because you're asking
for a total commitment of significant dietary restrictions throughout
their life," Adler said.

Having celiac disease means "a complete lifestyle change when it comes
to eating things that most people take for granted," said Cynthia
Kupper, executive director of the Gluten Intolerance Group of North
America.

"Buying a loaf of bread in the grocery story or picking up a box of
cereal or going to a fast-food restaurant is not so easy for a person
with celiac disease," she said.

Danna Korn, an author whose son has celiac disease, made similar
comments, noting that people with celiac disease also can't eat
regular pizza, pasta, cookies, cakes and pretzels or drink beer.

"The things that Americans eat so much of, you can't eat anymore — at
least not the way you know them," she said. "There are gluten-free
alternatives."

Affected families have to be very knowledgeable because gluten can be
hidden in products that one might not think of, such as soy sauce,
which often is made with wheat, Kupper said.

"Wheat flour can be used as a filler in anything from gravy to
medications," according to "No More Digestive Problems" (Bantam, $14)
by Dr. Cynthia M. Yoshida. Celiac patients have to be "avid label
readers."

They also have to put a lot of thought into grocery shopping as well
as into making preparations for eating out.

For instance, Ellie Grimes, 9, of Louisville always has "had to eat
different things than her friends," said her mother, Laurie Grimes.
"At birthday parties, I take her a birthday treat, and I take things
to school when people are having birthday parties. I just have to kind
of follow behind her and provide for her when I know food is going to
be offered in public places because it's never gluten-free."

And Ellie has been taught to turn down taboo foods. Empowering
children in that way is important, said Korn, whose 15-year-old son,
Tyler, was diagnosed at 18 months.

"Basically, I gave him control from day one, taught him how to read
the labels, taught him to say, 'I can't eat that because it has gluten
in it,'" said Korn. "That way, they will pass up the cookies that are
passed around the table."

Efforts are being made to find another treatment besides strict
adherence to a gluten-free diet, but in the meantime, the price of
alternative foods can be a financial burden, said Dr. Alessio Fasano,
director of the Mucosal Biology Research Center for the University of
Maryland School of Medicine Center for Celiac Research.

For instance, Laurie Grimes said cookies, a box of pasta or crackers
might be as high as $4.

Sarah Hamilton, president of the Greater Louisville Celiac Sprue
Support Group, recommends homemade alternatives. She's done cooking
demonstrations in homes, showing how to whip up pizza.

Alternative foods taste "almost exactly like wheat products," Laurie
Grimes said, although when making them, "it takes a while to get the
recipe tweaked so that it does perfectly mimic" regular food.

Grimes' husband, Steve, makes bread for Ellie each week, using a
combination of rice flour, tapioca flour, potato starch and bean
flour. Ellie said the bread tastes best when toasted.