Three Million Americans Suffer From Gluten Intolerance

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THREE MILLION AMERICANS SUFFER FROM GLUTEN INTOLERANCE

Provided by Cox News Service on 8/9/2004

by VANESSA MALTIN

 

 

WASHINGTON _ Andy O'Dell spent most of his life

suffering. He just didn't know why.

 

After years of visiting doctors for severe fatigue and

abdominal cramping, the 22-year-old from Jupiter,

Fla., along with his mother, father and younger

brother, was diagnosed with celiac disease.

 

The disease, also known as celiac sprue, is a

digestive condition caused by an intolerance to gluten

proteins found in all forms of wheat, barley, and rye.

If untreated, it can lead to vitamin and mineral

deficiencies, osteoporosis, infertility and central

and peripheral nervous system disorders.

 

Three million Americans, one in every 150, are

believed to suffer from celiac disease _ 10 times more

people then previous estimates, according to a

National Institutes of Health panel that reviewed the

disease last month.

 

The condition, which affects people of all ages, can

be diagnosed by a blood test or biopsy of the small

intestine. But in many instances, patients suffer for

years because physicians don't test for it or they

relate symptoms to another disorder, most commonly

irritable bowel syndrome.

 

The cause of the disease is still unknown, but

researchers have found evidence that links the disease

to genes that regulate the body's immune response to

proteins.

 

" We have a very effective treatment _ a gluten-free

diet _ but if physicians don't recognize when to test

for the disease, patients are going to suffer

needlessly, " said Charles Elson, chairman of the NIH

panel.

 

O'Dell had such a severe case of the disease that he

spent 12 to 14 hours a day sleeping. When he was awake

he had little if any energy _ so bad he almost had to

drop out of college, said his mother, Karen O'Dell.

After several visits to their family doctor with no

conclusions as to why her son was sick, Karen took

Andy to an allergist who conducted a full battery of

tests, revealing his gluten intolerance.

 

" It wasn't so bad when he was in high school because I

was cooking for him and he ate lots of fruits,

vegetables and meat, " said O'Dell, a registered nurse.

" But when he went to college he was living in a

fraternity house where he ate pasta, pizza and beer

all the time _ all of which are full of glutens. "

 

After learning about her son's condition, O'Dell went

on the Internet and learned that celiac has been

connected to the common condition attention deficit

disorder (ADD), which her younger son suffers from, as

well as eczema, which she herself suffered from as a

child.

 

Mary Schluckebier, executive director of the Celiac

Sprue Association, said that in some cases children

may be misdiagnosed with ADD, when in reality they

suffer from celiac disease.

 

" The symptoms can be very similar, " Schluckebier said

citing fatigue and lethargy as common signs of the

disease in children.

 

O'Dell took this information back to her family doctor

and asked for the whole family to be tested for the

disease.

 

" My doctor actually had the nerve to tell me we

probably didn't have (celiac) because they had never

heard of the disease and had never seen anyone with

it, " she said. " Well, I told them that clearly they

did have someone with it _ my son _ they just didn't

know about it. "

 

Further tests confirmed that the entire family had the

disease, including O'Dell's husband, John, who had

been treated for years for irritable bowel syndrome

before learning he had celiac sprue.

 

After seven months of being on a gluten-free diet,

Andy O'Dell said he feels like a new person. He moved

out of his college housing so he could have his own

kitchen and follow his special diet.

 

While he really misses eating pizza and having a cold

beer, he said that giving up some of his favorite

foods has been easy compared to being sick all the

time.

 

Celiac " affected my mind as much as it affected my

body, " he said. " Since I've been on the diet my (grade

point average) has gone from a 2.75 to a 3.25 because

I can actually concentrate. "

 

Mother and son do most of their shopping at health

food stores because many have special sections

dedicated to gluten-free products such as Amazon

Frosted Flakes and Peanut Butter Panda Puffs cereals.

 

But many processed food products are not labeled for

their gluten content _ many reading only " modified

food starch, " meaning it may contain any one of a

number of glutens.

 

Congress is considering a bill that would require food

manufacturers to label products containing six

substances to which large numbers of people are

sensitive, including gluten. The bill has been

approved by the Senate, and a House vote is expected

as soon as this week(cq).

 

Several natural and organic markets around the country

offer gluten-free cooking classes where participants

learn new recipes for the " starchy " foods that would

otherwise be eliminated from their diets.

 

There are also products available online to make

pancakes, cookies, waffles, bread, pasta and even

cakes out of alternative forms of flour from rice,

potato, and soy.

 

With hopes of helping families learn about celiac

disease, the Children's Digestive Health and Nutrition

Foundation and the North American Society for

Pediatric Gastroenterology, Hepatology and Nutrition

recently launched an educational campaign to provide

information to health care providers and parents.

 

" We plan to raise greater awareness about celiac

disease and urge physicians to add it to their

screening checklist, " said Dr. Alessio Fasano, chair

of the foundation's Celiac Disease Campaign. " We now

have the information we need on how to diagnose and

treat this disease, and we need to start applying that

knowledge into practice. "

 

On the Web:

 

Celiac Disease Foundation: www.celiac.org

 

Vanessa Maltin's email address is vmalti

 

 

Cox News Service