Celiac Disease

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http://www.newsweek.com/nw-srv/focus/he/he0115_1.htm

The Perils of Pasta

As many as 1 million Americans may have an intolerance for gluten, an

ingredient of more foods than you may think.

By Anne Underwood

Mack thought she was dying. For 11 years, the secretary from Baton

Rouge, La., suffered digestive problems. Her weight dropped from 140 pounds

to 110. Her hair fell out in clumps. Good teeth were coming out. Her bones

ached. Doctors diagnosed ulcers, colitis, migraines, chronic fatigue

syndrome — everything except what was actually ailing her. Finally her aunt

handed her an article on celiac disease. Mack had already noticed that she

felt particularly ill when she ate certain foods, including bread and pasta,

and the article offered a potential explanation. People with celiac disease,

it said, have a lifelong intolerance for gluten — the protein in wheat, rye

and barley. The resulting inflammation of the intestines makes it difficult

to absorb nutrients. Mack immediately went on a gluten-free diet. " Four

years later, my life has turned around, " she says. Her body feels strong

again, and her spirits are soaring. At 55, she's getting married in

November.

Celiac disease — also known as nontropical sprue and gluten-sensitive

enteropathy — was identified in 1888 by a British doctor, who linked it to

diet. But it was not until World War II that a physician in the Netherlands

pinpointed wheat as the troublesome food, after noticing that afflicted

children improved during wartime bread rationing and relapsed afterwards.

Today roughly one in 250 Europeans has celiac disease. The diagnosis is far

less common in the United States, but experts believe that's largely because

many doctors fail to recognize the condition. In 1998, Dr. Alessio Fasano of

the University of land studied 2,000 random blood samples from the Red

Cross and found markers for the disease in one of every 250 donors — right

in line with European rates.

How do people get this condition? Celiac disease results from an immune

response gone awry. Normally when food enters the small intestine, critical

nutrients are absorbed into the bloodstream through masses of tiny

fingerlike projections called villi. But in people with celiac disease, the

immune system mounts an all-out assault against gluten — and on any villi

that have absorbed it. The villi become inflamed, eventually shriveling up,

flattening out or even disappearing. Without functioning villi, the body

stops absorbing food properly. Symptoms range from diarrhea and abdominal

cramping to diseases of deficiency, such as anemia, osteoporosis,

infertility and seizures. In children, celiac disease can stunt growth and

even cause behavioral changes that mimic autism.

The only remedy is to eliminate gluten from the diet. That means avoiding

any food that contains wheat, rye, barley and (according to some celiacs)

oats. Bread and cakes are obvious culprits. But celiacs must also rid their

diets of soups and sauces thickened with flour, meat loaf made with

bread-crumb fillers, even beer and whiskey. Sound hard? It gets tougher.

Gluten can lurk in surprising places. What is innocently labeled " hydrolized

vegetable protein " can be made from corn or rice (which are fine) or from

wheat (which is not). The distilled vinegar in mustard and ketchup may be

made from either wood (no problem) or wheat. The list is so extensive that

Jax s Lowell, author of " Against the Grain: The Slightly Eccentric

Guide to Living Well Without Gluten or Wheat, " jokes that she used to

imagine the tabloid headline: CELIAC SENTENCED TO STARVATION IN FOOD COURT .

But celiac disease is hardly a death sentence. " You don't have to undergo

surgery or take insulin injections or chemotherapy, " says Elaine Monarch,

founder of the Celiac Disease Foundation in Studio City, Calif. " All you

have to do is change your diet. " Gluten-free products now range from pancake

mixes to communion wafers. " The new bean flours have made a huge

difference, " says Bette Hagman, who has just published her fourth book, " The

Gluten-Free Gourmet Bakes Bread. " " The only thing I've never figured out how

to make is beer. "

To get celiac disease, people must have a genetic predisposition. Often a

trigger, such as surgery, childbirth, severe stress or a virus, exacerbates

the condition enough to make symptoms noticeable. Because the disease has a

genetic component, immediate blood relatives of celiacs are prime

candidates; surveys suggest that about one in 10 is afflicted. The disorder

is also common among people with other autoimmune disorders, such as lupus,

rheumatoid arthritis or juvenile-onset diabetes. Whites are at greater risk

than people of Asian or African ancestry.

The key to conquering celiac disease is simply knowing that you have it.

Unfortunately, people who have the condition often lack the classic symptoms

of diarrhea and weight loss — and the other symptoms are so diverse that

doctors often miss their underlying cause. Dr. Green of New York's

Columbia-Presbyterian Hospital recently surveyed 1,600 celiac patients

nationwide and found that on average they took 11 years to be diagnosed.

During that time, irreparable damage may occur. The gold standard of

diagnostic tests is a small bowel biopsy. But the discovery that celiacs

have excessive levels of certain antibodies in their blood has also made

blood tests possible, according to Dr. ph Murray of the Mayo Clinic in

Rochester, Minn. These tests cost between $100 and $400 and are usually

covered by insurance. A positive test result means a trip to a

gastroenterologist for a biopsy. Negative readings are usually reliable,

though if you have a family history of celiac disease, the doctor may order

a biopsy anyway.

Once celiacs change their diet, the villi restore themselves. Most patients

notice an improvement within a week, although complete recovery takes three

months to two years. It sounds like a dire diagnosis, but most sufferers are

delighted when they finally learn what has been causing their problems.

They're not hypochondriacs after all. They're just glutens for punishment.

With Peraino

Newsweek, October 11, 1999