Protein in wheat, rye and barley can cause even more serious ailments for those with often-undetected celiac disease

Some people feel physically out of sorts, but are never able to pinpoint the problem. Others have severe digestive problems.

Either could have celiac disease, which is caused by eating gluten, a protein commonly found in wheat, rye and barley.

''Celiac disease is the most common genetic disease of mankind. It occurs in nearly 1% of the population,'' says Danna Korn, author of two books about gluten-free living.

Once people stop eating gluten, she says, the disease goes into remission.

Only a small portion of people suffering from celiac disease have been diagnosed, Korn says. People who have it mostly look like everyone else walking down the street, she says, and may not even have any obvious symptoms.

However, if left untreated, celiac disease can develop into cancer and other serious ailments.

Maureen Norris of Franklin suffered with a variety of symptoms for years before she found out she had celiac disease. ''At one time I weighed less than 100 pounds and I'm 5'7'','' she says. '' At the time, I was a baker and was constantly making myself sick and never realized why.'' Before this, she had been anemic, had broken bones while growing up, mood swings, migraine headaches, gallbladder disease, irritable bowel syndrome and a bleeding ulcer.

Norris was diagnosed with celiac disease nine years ago. When she was diagnosed, she learned that problem was gluten. She had to change her job because being around wheat flour in the bakery aggravated her problem.

Norris, who now works as an assistant teacher with special needs children at Centennial High School, says her sensitivity to flour is so great that when the children work on a school baking project she has to leave the room.

Other people with celiac disease have fewer symptoms.

Jim Lowe of Hendersonville was diagnosed with celiac disease after about 18 months of noticing that the foods he was eating didn't agree with him. ''What first scared me the most is that you're apt to have cancer, diabetes and other diseases,'' he says. ''Then I found out that's not really true if you get your diet under control.''

For many people this is hard, but it's important for sufferers to do. For Lowe, deleting gluten from his diet wasn't that big of a deal.

''You can't give up and throw up your hands and say 'I can't do that,''' he says. ''I decided not to let it be a big deal. Nobody knows I have it (and) it doesn't affect my work schedule.''

As more people become aware of celiac disease, Lowe says, ''more restaurants are coming up with gluten-free parts of the menu and grocery stores … are coming around.''

Dr. Nuri Ozden, assistant professor of medicine at Meharry Medical College, says that celiac disease is the single most prevalent immune disease. ''Most patients (in the United States) are asymptomatic. Sixty percent of the children and 41% of the adults have no symptoms at all.''

Lately, he's seeing more patients in the later phases of celiac disease because symptoms and signs had gone unnoticed, especially among adults. ''The average time in the U.S. (before) a person with symptoms is diagnosed is 11 years,'' he says, ''because physicians are quite unaware of the significance of the disease.

''The delay dramatically in-creases the possibility of the consequences of celiac disease — including anemia, osteoporosis, seizures and even cancer,'' Ozden says. It can also cause developmental problems in children.

''Because the symptoms of celiac disease can be quite similar to irritable bowel syndrome, some studies have concluded that patients being seen with this presumed diagnosis should be screened with antibodies (for celiac disease),'' says Dr. George Wright, a gastroenterologist with the Heritage Medical Associates in Nashville.

Once diagnosed, ''you can take all the supplements in the world, but if your intestine is damaged, none will help,'' says Korn. Her son was diagnosed with celiac disease before he was a year old, but not before she consulted four doctors.

In addition to the books she has written, Korn is a consultant to Wild Oats food stores. Her pamphlets, Gluten-Free Living, are available at the stores and list many gluten-free foods, such as plain fruits, vegetables and meats. They also mention foods to avoid.

When you set out to find gluten-free products, don't put your shopping on auto pilot. Sometimes, prepared products that were once labeled gluten-free will have changed recipes and now contain gluten, Korn says.

Also, many products that say they are wheat-free aren't necessarily free of gluten. Some prepared foods are processed in plants that also produce products with wheat, so there's a chance for cross contamination.

Additionally, gluten is not usually listed on labels. Foods such as soy sauce, modified food starch, cottage cheese, pudding and ice cream might have gluten in them. To be safe, look for ''gluten-free'' clearly printed on the label.

When it comes to breads, cookies and other pastries, Norris prefers to make her own ''because they taste better,'' she says. Also, the prepared products are expensive and tend to dry out.

Sometimes Norris gives cooking demonstrations at support group meetings. Most of the ingredients are available at Wild Oats, but they're expensive.

Norris prefers to shop at international markets for ingredients such as rice flour, tapioca flour and potato starch that she uses in her baking mixes. ''They're much cheaper,'' she says.

Norris and Lowe recommend connecting with a support group. ''Everybody I know in the support group is positive,'' Lowe says. ''We pat each other on the back.''

Where to get help locally

Nashville Celiac Support Group: Meetings are held at Centennial Medical Center. Contact Maureen Norris of Franklin at 591-9616, or e-mail her at manorris@comcast.net.

Tips and recipes

Books with tips on gluten-free living and gluten-free recipes:

Wheat-Free, Worry Free, The Art of Happy, Healthy, Gluten-Free Living, by Danna Korn (Hay House, $14.95 paperback). Her first book was Kids with Celiac Disease.

The Gluten-Free Gourmet Cooks Comfort Foods, by Bette Hagman, (Owl Books, $17.)

Questions answered about gluten and celiac disease

Here are questions often asked about gluten and celiac disease:

What is gluten?

Gluten is the general name for proteins found in certain cereal grains, specifically wheat, rye and barley.

What is celiac disease?

An intolerance to gluten. For people with celiac disease, gluten inhibits the absorption of important nutrients in the small intestine.

How do you get it?

It's an inherited disorder. You either have it or you don't — there's no in between.

How does it affect the body?

When the glutens reach the small intestine, they flatten the villi, which are small hair-like spikes protruding from the lining, thereby inhibiting the absorption of vital nutrients to the body.

What are the symptoms of celiac disease?

Digestive problems such as indigestion, heartburn and diarrhea especially when the disease is well advanced. Many people are asymptomatic or misdiagnosed. The results of celiac disease can evolve into serious illnesses if left untreated, such as anemia, osteoporosis, infertility, skin disorders, arthritis, cancers such as lymphoma and small bowel cancer, and migraine headaches.

How prevalent is it?

In a consensus statement prepared by the National Institutes of Health in June 2004, an average of 1 in 133 Americans probably has celiac disease. That means 2.2 million Americans are living with celiac disease — the equivalent of the population of Nevada. In studies to date, people most likely to have the still elusive genes with celiac disease, are those of northern European heritage, especially Irish. Fewer studies have been done on people from other parts of the world, including Asia and Africa. It seems to be more common in women than men. Others likely to be affected are those with diabetes, thyroid problems, osteoporosis and Down's syndrome.

How is it diagnosed?

By a blood test that can be done in any lab in the country. If the test is positive, it should be confirmed by an intestinal biopsy. Most people with the disease do not have obvious digestive symptoms. It's best to be screened if you have a close relative who has the disease.

Is there a cure?

No. But if you catch it in the in the early stages and follow a completely gluten-free diet, you can put the disease into complete remission and live a normal life with a normal life expectancy. If, however, your body has already developed some of the serious side effects such as cancer, it may be too late for full recovery. If you deviate from the diet, you'll likely develop symptoms again.

How many times will it take until the body doesn't recover if you slip off the gluten-free diet?

No one knows at this time.

Are all foods labeled with gluten?

No. Foods listed with wheat, rye or barley in the ingredients list are the obvious ones with gluten in them. Synonyms for wheat, which also include gluten, are triticale, semolina, spelt, durum and farina. If a food is listed as wheat-free, it doesn't mean that it is gluten-free.

What are hidden glutens?

Many common processed foods and drugs contain hidden glutens which are not listed on the label. Some of them are: cold cuts, processed and canned meats, sausages, soups, soy sauce, shredded cheeses, some ice creams, non-dairy creamers, yogurts with fruit, hot chocolate, salad dressings, chip-and-dip mixes, meat sauces, mustard, ketchup, tomato sauce and some preservatives. Beware of lotions, cosmetics and other skin-care products. Some contain wheat or wheat derivatives that would aggravate skin conditions.

What's safe?

Products clearly labeled ''gluten-free'' are acceptable. Foods with no or the least amount of processing, such as fruits, vegetables and fresh meats are usually safe.

How long does it take to feel better once you go on a gluten-free diet?

Most people notice significant relief within two weeks. For others with persistent symptoms, drugs may be necessary until the intestine heals.

Sources for the above information: Dr. George Wright, gastroenterologist at Heritage Medical Associates, Nashville, Dr. Nuri Ozden; assistant professor of medicine specializing in internal medicine, gastroenterology and liver disease at Meharry Medical College; National Institutes of Health Consensus Development Conference on Celiac disease, June 28-30, 2004, Journal of the American Medical Association, Aug. 23, 2004. Sources of information about celiac disease: Celiac Disease Foundation: www.celiac.org; Celiac Sprue Association: www.csaceliacs.org; Celiac Society: www.celiacsociety.com; The Gluten-Free Pantry: www.glutenfree.com.

Thayer Wine writes about food and wine for The Tennessean. Reach her at 726-8995 or twine@Tennessean.com.  

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