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A History of Celiac Disease

The story of celiac disease is both old and new. It was first mentioned over two centuries before Christ but it took two more millenniums before anyone tried to do something about curbing the effects. After that slow start, the disease began snowballing with recognition, control, easier diagnosis, and research. It is hoped that somewhere in the next ten years there may also be a "cure" or a simpler method of control than the lifelong diet free of gluten in wheat, rye, and barley. The sad part is that, although scientists have proved that one in one hundred fifty people may have celiac disease, only one out of ten has been diagnosed so far. The others are living with this condition, unaware that they could have a far healthier life.

This disease—the autoimmune reaction to gluten in our food leading to malnutrition—may have its roots in the agricultural revolution 10,000 years ago when man stopped chasing prey for his only food to settle down to raise seeds as well. Who knows what intolerances developed in the people unused to grains in their diet? But the first known writing of the suspected disease was in the third century.

250 A.D.: Artaeus of Cappadocia first wrote of the symptoms but it wasn't until 1856 that his work was translated into English.

1880: Samuel Gee, M.D., in an article in the medical magazine St. Bartholomew's Hospital Reports, Vol. 24, identified food as the probable cause of the debilitating symptoms of the malady later to be called celiac disease. He suggested cow's milk be removed from the diet and that other foods be introduced in small portions. He alsowas astute enough to recognize that the symptoms probably arose from some foods but didn't specify which ones. He suggested patients remove from their diet foods that caused symptoms.

1924: Scientists felt that celiacs should be on a rice and banana diet. It worked, because it removed all grains, meats, vegetables, and milk from the patient. As the children improved (only children were thought to have the disease), they were introduced to other foods. The improvement suggested to the doctors that they were "cured." We know now that the doctors were wrong.

1946-1950: During World War II celiacs in Holland were unable to get wheat for their bread and surprised their doctors by their return to good health. W K. Diecke wrote his doctoral thesis on the subject, identifying wheat as a source of the symptoms. It was the first definitive suggestion that a certain grain contained toxicity to those with celiac disease.

1958: Introduction of the Rubin Tube. Up until this time diagnosis for celiac disease had to be made from a description of the symptoms—diarrhea, vomiting (in infants), malnutrition, and protruding stomach. Although barium X rays were used to diagnose some internal ailments, they failed to show celiac disease. There was no way of actually viewing the upper intestine without surgery until Dr. Cyrus B. Rubin and his associates at a Seattle hospital created the first crude tube with rotating blades to take a biopsy of the damaged area when swallowed by the patient. This tube has been improved over the years from the original tests with the patient awake and conscious; now the endoscopy is practically painless with the patient medicated and asleep throughout the examination. At this time it was known that children had celiac sprue but few recognized the fact that the adult disease, nontropical sprue, was the same. The Rubin Tube showed that, in biopsy, they were identical. Doctors still stuck to the separate names while patients were beginning to suspect that they were the same. Adults suffered much longer before being diagnosed, often being told it was "all in their heads" or to "just take a stomach settler and they would feel better."

1973—1974: Start of celiac support groups. Until this time, each diagnosed patient felt alone while the doctors had little knowledge and no time to help him/her cope with the diagnosis of a "rare" disease that had no cure except a strict diet. In fact, the disease was so little known that few people had heard of it, and dieticians were of no help because they had received little information about it.

Five support organizations started at about the same time, each begun because the founder found a fellow sufferer and realized she was not alone and that others outthere must need help, too. On the east coast of the United States, the American Celiac Society was started by Annita Garrow for research; in Seattle, the Gluten Intolerance Group was founded by Elaine Hartsook for research, support, and diet instruction. A few years later, in the Midwest, the Midwestern Celiac Sprue Association (later to be called CSA/USA) was begun by Pat Garst for support and diet instruction. At the same time, in Canada, Kay Ernst, the mother of a celiac child, joined with another to begin what became the Canadian National Association. Later, the organizations in the United States were joined by the Celiac Disease Foundation in Los Angeles, organized by Elaine Monarch. These groups are all still active and several have joined together to provide support and educate the public.

These groups, working alone or with others, have been responsible for better labeling laws. We can now tell by the new ingredients list if a product contains gluten or milk products, although they may be hidden under the term "modified food starch" or some other terms for gluten, while milk may hide under such terms as "whey" or "casein." The groups, whether alone or in conjunction with others, are constantly working to improve the wording of labels.

1978: The toxic part of the grain found! Although doctors were aware that certain grains were responsible for the disease, it wasn't until Donald Kasarda, Ph.D., identified the particular proteins in gluten that caused the toxic reactions from the grains of wheat, rye, barley, and, possibly, oats.

1992: The first all-celiac cruise. Mary Alice Warren of Florida arranged a Caribbean cruise with all gluten-free meals for celiacs across the nation and Canada. She had chefs and helpers in a separate gluten-free kitchen prepare all meals. Between stops, the celiacs were treated to seminars on eating, cooking, and living gluten-free. She also arranged for cruises in 1993 and 1994.

1998: Blood testing could show celiac disease. This was the beginning of the discovery by scientists that several different sereological studies could discern celiac disease, but physicians continued to rely on the physical symptoms and the endoscopy for diagnosing patients.

1998-2001: Alessio Fasano, M.D., working in Maryland at the Center for Celiac Research, realized that the number of celiacs reported in the United States was far lower than the numbers reported in Europe and wanted to know why. Was it our way of living? Our heritage? Or the fact that doctors here were not diagnosing the illness?

He started a nationwide project of blood testing using the help and facilities of various celiac organizations nationwide at their meetings, conventions, and othergatherings. He discovered that the ratio, which formerly was thought to be 1 in 3,000, was actually closer to 1 in 150! Celiacs were not being diagnosed in the United States. He started an active campaign for celiac awareness with the Walk.

2002: First International Walk for Celiac Disease. This walk was to raise awareness of the disease around the world and was so successful that others followed.

In conclusion, take heart, the activities surrounding celiac disease—support awareness and research—have never been more active. You are not alone now. There are many out there with the disease and many more working to make it easier and easier to live, whether it be on the diet for life or eventually finding some type of medicine that may curb the toxicity of the proteins.

Today's celiacs are fortunate to find themselves the focus of so much research that it can be mind-boggling. Some medical scientists are attempting to find a simple pill that can be taken to offset the toxic effects of gluten. Others are attempting to create a wheat that will not contain any toxic particle. And across the nation even suppliers are aware that wheat, as well as other products, can cause extreme illness and are now considering labeling foods that contain allergens. There are dreams of a better future for all of us.

But until some of these dreams come true, we will have to settle for making or buying products we can tolerate and sticking to the diet. It's difficult for one person to keep up with all the scientific work, but the large celiac organizations have conferences that invite the top doctors to bring insight on the latest discoveries as well as keep us aware that this disease, unresolved, can lead to more chance of having another or several of the autoimmune diseases.

To join a support group near you and become part of a larger organization, write or call one of the following:

American Celiac Society Dietary Support Coalition, P.O. Box 23455, New Orleans, LA 70183-0445; phone (504) 737-3293; e-mail: AmerCeliacSoc@netscape.net.

Canadian Celiac Association, 5170 Dixie Road, Suite 204, Mississauga L4W 1E3, Ontario, Canada; phone (905) 507-6208, fax (905) 507-4673, toll free (800) 363-7296.

Celiac Disease Foundation, 13251 Ventura Blvd., Suite 1, Studio City, CA 91604-1838; phone (818) 990-2354, fax (818) 990-2397, e-mail: cdf@celiac.org. Web site: www.celiac.org.

Celiac Sprue Association/United States of America (CSA/USA), P.O. Box 31700, Omaha, NE 68131-0700; phone (402) 558-0600.

Gluten Intolerance Group (GIG), 15110 10th Avenue, SW, Suite A, Seattle, WA 98166; phone (206) 246-6652, fax (206) 246-6531, e-mail: info@gluten.net. Web site: www.gluten.net.

REFERENCES

Annette C. Bentley, "Evolving Celiac Organizations in the United States." Paper delivered at CSA/USA convention in Omaha, Neb., October 2001.

Alessio Fasano, M.D., "Celiac Disease: the Past, the Present, the Future." Paper delivered at Canadian/Celiac Conference, Ottawa, Canada, May 16, 2001, and at the Gluten Intolerance Group national convention, Winston-Salem, N.C., 2001.

Stefano Guandalini, M.D., and Michelle Melin-Rogovin, "The History of Celiac Disease and of Its Diagnostic Practices." Paper delivered at Living Free national convention, Philadelphia, Pa., 2001.

Copyright © 2004 by Bette Hagman