- The Washington Times - Wednesday, September 29, 2004

When Baltimore resident Bob Levy found out he was intolerant to gluten in 1995, his daughter Alyssa Lanot asked him how he was going to eat on his travels.

“You know I am,” he told her.

“I was determined from the very beginning this was going to inhibit me as little as possible,” Mr. Levy says.

Studies show he is among the 1 out of 133 persons nationwide who have celiac disease or an intolerance to gluten, a protein found in wheat, rye and barley, as reported by the National Institutes of Health. About 3 million Americans suffer from celiac disease, according to NIH.

Mr. Levy’s treatment required elimination of gluten from his diet, a move that put an end to the severe bloating, cramping and other symptoms he had experienced from eating the protein.

He and his wife started Bob & Ruth’s Gluten-Free Dining and Travel Club to provide gluten-free meals on trips, cruises and tours — giving celiacs more choices beyond the no-crouton salads and non-processed, non-breaded menu items that are safe for them to eat.

The time Mr. Levy, his fellow travelers and other celiacs have to continue on the gluten-free diet depends on whether researchers find medication to inhibit the immune response to gluten, modify wheat to remove the offending protein, develop a grain the food industry is willing to mainstream or identify another solution.

A research team at the University of Maryland School of Medicine started by Dr. Alessio Fasano is developing a pill to block the zonulin molecule, which is produced in large amounts in celiacs and weakens the intestinal barrier, causing what is called leaky gut.

The medication would keep gluten in the small intestine, where it can be dismantled into peptides, or partially digested protein, instead of leaking out where it can react with the body’s immune system.

Celiac disease is an autoimmune disease. The immune system attacks the body, in this case the small intestine, when triggered by gluten. The villi lining the intestine are damaged and cannot absorb and digest nutrients from food.

This problem can lead to malnutrition and any of a long list of symptoms, including weight loss, anemia, chronic fatigue, bone pain and abdominal pain, along with nutritional and immune-related disorders, such as osteoporosis and thyroid disease.

“You need to have a physical interaction between the immune system and gluten to trigger the autoimmune process,” says Dr. Fasano, who started his research seven years ago with plans to develop a treatment for gluten intolerance. “It’s the only autoimmune disease [for which] we know the trigger — gluten.”

If the gluten trigger is removed, the villi can rebuild and become healthy within six months to a year, says Dee Sandquist, registered dietitian (RD) for the American Dietetic Association (ADA), in Portland, Ore.

Modifying wheat to remove the trigger, however, is not a likely solution for celiacs, says Dr. Fasano, a professor of pediatrics, medicine and physiology at the University of Maryland in College Park.

Gluten consists of two main protein groups, gliadin and glutenins, the first of which is most toxic for celiacs, he says. Proteins are made of a chain of amino acids that the body digests into smaller fragments, or peptides.

Celiacs lack the enzyme needed to break down the gluten protein into those fragments.

Genetic engineering faces the challenge of genetically modifying more than 50 of the fragments toxic to celiacs, Dr. Fasano says. Other challenges point to the fact that removing gluten from wheat will change the grain’s characteristics and palatability, and growing the grain will require strict control to avoid “cross-pollination with other grains in the wild,” he says.

A research team from the Agriculture Research Service (ARS) of the U.S. Department of Agriculture is studying glutenins in wheat, the protein in gluten that allows leaven products to be made out of the grain.

Glutenin links together to form a network that can trap gas bubbles, which provide the leavening effect.

“We’re trying to understand the properties of those proteins so we can improve their ability to make bread,” says Ann Blechl, a research geneticist at ARS in Albany, Calif., who holds a doctorate in genetics.

“We don’t know all of the proteins that trigger those [celiac] conditions. A lot of them are part of this network. If you did knock them out, it’s not clear you still could make bread from wheat.”

In the meantime, celiacs can use beans, tapioca and alternative grains that are free of gluten — including amaranth, buckwheat, corn, Montina, quinoa, rice and sorghum — along with tapioca.

A research team from Montana State University accidentally came up with a gluten-free grain, commercially marketed as Montina, from Indian rice grass.

“We were trying to find crops that were better suited to grow in Montana,” says Alice Pilgeran, assistant research professor at Montana State University in Bozeman, who has a doctorate in plant pathology.

The research team evaluated using Indian rice grass as a state crop, a native plant used for re-vegetation and reclamation, and found that it lacked gluten.

The team worked with the celiac and nutrition community to develop the grain, which by itself produces a dense flour, and found that it could be mixed with other flours to achieve elasticity and lower the amount of insoluble fiber.

“Quite a few organic stores have Montina, but it’s not everywhere yet,” Ms. Pilgeran says.

Another ARS research team is studying ways to enhance use of sorghum, a grain that is not widely accepted and is used by a small number of food manufacturers to produce gluten-free products, says Scott Bean, research chemist at ARS in Manhattan, Kansas. The team is comparing the properties of gluten to those of kafirin, the main protein in sorghum.

“We’re trying to find ways to make it more functional, so it could act more like a wheat flour,” Mr. Bean says.

For now, celiacs have to watch what they eat.

“The gluten-free diet is very challenging to embrace. Gluten is everywhere, particularly in processed foods,” Dr. Fasano says.

However, Mrs. Sandquist says, “It’s the only diet people really want to stay on, because they feel better.”

Symptoms caused by eating gluten-containing foods go away within days up to three weeks, she says.

Mrs. Sandquist and Lola O’Rourke, a registered dietitian for the ADA, recommend that celiacs consult with a registered dietitian to help them identify foods they can eat and to establish a nutritional diet.

“There are still ways to enjoy eating while still avoiding gluten,” Ms. O’Rourke says. “You need to get a little more creative and look at cultural grains. There really are a lot of options out there.”

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