THE WHEAT FACTOR : BODY'S INABILITY TO ABSORB GLUTEN TRIGGERS A RARE, DEBILITATING REACTION.

Byline: Elizabeth M. Cosin Daily News Staff Writer

At 18 months, Danielle Gaines was a healthy, happy child. She smiled a lot and loved her weekly trips to Mommy and Me gym classes. Even then, she showed a passion for gymnastics, a love of animals and an inquisitive nature.

During the next six months, the smile gradually faded, and Danielle ended up lying in a bed at Childrens Hospital of Los Angeles, a shadow of the outgoing, vivacious child she had been. Danielle had lost eight pounds on her tiny body, complained constantly of stomach problems and became lethargic and listless. A month after her second birthday, she weighed a mere 17 pounds.

``It was just heart-wrenching, really frightening,'' Jill Moray Gaines of Calabasas said of her eldest daughter, now 7. ``The doctors did every test they could and kept coming up with nothing. It was a terrible experience, the waiting.''

Danielle underwent hundreds of tests in search of the cause of her sudden illness. The possibilities were ominous and frightening - cystic fibrosis, cancer or worse. Each time a new theory. Each time another negative.

It wasn't until the fifth day of Danielle's stay at Childrens Hospital that doctors solved the mystery: She had celiac disease.

Few doctors think to diagnose the symptoms - including sudden weight loss, unexplained low blood count, diarrhea or constipation, infertility in women - as celiac disease. Most of the public has never even heard of it.

People with the little-known disorder cannot absorb gluten, a protein found in wheat. Celiac, an inherited disease, is most common among Northern Europeans, particularly people in Great Britain and Ireland. There, it occurs in one in every 300 people. In the United States, the estimated occurrence of celiac is one in 2,500, but many doctors and experts on the disease say the numbers probably are closer to one in 500.

There is no cure for celiac disease, but it can be controlled with a strict gluten-free diet.

Problem is, practically every processed food has some trace of gluten.

For Danielle, that means no cake, no cookies, no cereal ...

``No pizza, no doughnuts, no pasta, no lots of things,'' said Danielle, who attends Chaparral School, near the family's home. ``I see things I want, and it makes me sad. That's the only time when it's really, really hard.''

Consider the challenge Gaines faced after the diagnosis. Relieved though she was that her daughter's illness wasn't fatal, Gaines, like many sufferers and parents of sufferers, was at a loss for how to proceed. She didn't even know what foods she could feed her daughter without risking making her ill again.

The Celiac Disease Foundation in Studio City was her salvation.

Founded by Elaine Monarch of Sherman Oaks in 1990, the organization regularly makes rounds at medical conferences and holds seminars to raise doctors' awareness of celiac.

``It is very much underdiagnosed,'' said Wilfred Weinstein, a physician and professor of digestive diseases at UCLA and a member of the Celiac Disease Foundation advisory board. Like other experts, he says the problem for most doctors is that they haven't learned to look for celiac.

The symptoms not only vary widely, but often their causes are mistaken for a variety of other diseases. Experts say there are thousands of people who have celiac and don't know it.

``We've talked to people with confirmed diagnoses, and they had anemia for 20 years,'' Weinstein said. ``They saw doctors for 20 years, and no one diagnosed (celiac) until they got violently ill. There are many people right now walking around with it who have no idea they have it.''

Monarch, 56, knew she had hit on a dire need when she was diagnosed with celiac 15 years ago. Until the diagnosis, she had spent most of her life suffering a range of illnesses - from stomach problems to anemia - and no one ever quite knew why. Back then, she says, her doctor knew little about celiac, and she had few places to turn to learn more.

The only way she was going to get any answers was to look for them herself. So, she organized a meeting for celiacs early in 1990. Thirty-five people showed up from all over Southern California. By the end of that year, Monarch was fielding so many calls from celiacs seeking information, she decided to incorporate. The foundation was born. Now, when she holds meetings, as many as 150 people attend.

The foundation performs another equally important task. It supplies celiac sufferers with physician referrals and publishes lists on where to get gluten-free products. Those lists are vital to avert disaster, because labels on packages usually won't tell you enough.

``There is gluten in almost everything we eat,'' said Maurice Gourdji, a gastrointestinal specialist in Tarzana. ``It's in most processed foods, even in certain medications, which have a gluten coating. So you can eat gluten and not know it. It can be in canned vegetables, candy bars, ice creams. You have to be very, very careful.''

But being vigilant pays off for celiac sufferers. Eat a strict, non-gluten diet, experts say, and chances are you'll remain healthy and symptom-free.

``You can lead a normal life as long as you can control your diet,'' Monarch said. ``As long as you watch what you eat, you're fine, you're terrific, you're happy and you'll feel better than you ever did before.''

Clearly, the diet has benefited young Danielle.

Today, that smile she flashed as an infant is back for good. A pretty girl with straight black hair and wide eyes, Danielle is bright, talkative and full of energy. She has many friends, loves anything on four legs - including the family pet, a big, lovable Chesapeake Bay retriever - plays fullback on her local soccer team and danced to ``Girls Just Wanna Have Fun'' at her school's talent show. She still goes to gymnastics class and dreams of one day winning an Olympic gold medal.

And, at her age, she has learned the very grown-up task of reading complicated labels and the painful one of turning down a schoolmate's offer of a cookie, brownie or other sweets.

``I don't feel like I am different,'' she said. ``I try not to cry anymore when I see something that looks good but I know I can't have.''

Where to find gluten-free food

Local stores, Trader Joe's and Whole Foods Market (formerly known as Mrs. Gooch's), sell some gluten-free food. The following is a list compiled by the Celiac Disease Foundation of some West Coast businesses that provide the widest variety of gluten-free products:

Lundberg Family Farms: P.O. Box 369, Richvale, Calif. 95974; [phone]

Mrs. Leeper's: 12455 Kerran St., No. 200, Poway, Calif. 92064; [phone]

Nature's Hilights Inc.: P.O. Box 3608, Chico, Calif. 95927; [phone]

Omega Nutrition: 6505 Aldridge Road, Bellingham, Wash. 98226; [phone]

Pacific Grain Products: P.O. Box 2060, Woodland, Calif. 95776; [phone]

Pamela's Products: 364 Littlefield Ave., South San Francisco, Calif. 94080; [phone]

Shelton's Poultry: 204 N. Loranne Ave., Pomona, Calif. 91767; [phone]

Van's International Foods: P.O. Box 3132, Redondo Beach, Calif. 90277; [phone]

Authentic Foods: P.O. Box 48813, Los Angeles, Calif. 90048; [phone]

Dietary Specialties: P.O. Box 227, Rochester, N.Y. 14601; [phone]

Ener-G Foods: P.O. Box 84487, Seattle, Wash. 98124-5787; [phone]

Food for Life Baking Company: 2991 E. Doherty St., Corona, Calif. 91719; [phone]

G

Foods: 3536 17th St., San Francisco, Calif. 94110; [phone]

Gillian's Foods, Inc.: 145 Proctor Ave., Revere, Mass. 02151; [phone]

The Gluten-Free Pantry: P.O. Box 881, Glastonbury, Conn., 06033-0881; [phone]

Health Valley Foods: 16100 Foothill Blvd., Irwindale, Calif. 91706; [phone]

Jowar Foods, Inc.: 113 Hickory St., Hereford, Texas 79045; [phone]

MEMO: For more information, assistance, doctor referrals or to contact fellow celiac sufferers, call or write: Celiac Disease Foundation, 13251 Ventura Blvd., Suite 3, Studio City, Calif. 91604-1838; [phone].

CAPTION(S):

2 Photos, Box

Photo: (1--Cover--Color) Labeled for life

A rate an d often-misdiagnosed disease means Danielle Gaines (with mother, Jill) has to watch what she eats to avoid gluten

(2) Jill Moray Gaines mixes a safe batch of brownies while her daughters Stephanie, 5, Danielle, 7, and Allison, 3, gather to sample the dough. Danielle was diagnosed with celiac disease, which prevents her from absorbing gluten, a protein found in wheat.

Michael Owen Baker/Daily News

Box: Finding fluten-free food (See Text)