Grain protein can block food absorption

DEAR DR. DONOHUE: We were disappointed with a response you gave about celiac disease. You see, our 13-year-old son died from this disease in 2003. Neither you nor other doctors have gone far enough in alerting people to the fact that celiac disease can cause death. It can mimic the flu virus, as it did in our son's case. By the time doctors knew what he had, it was too late. As many as 5 percent of people with celiac disease die if they are left untreated and do not change their diets. Please alert your readers to this fact. M. and D.A.

ANSWER: My heart goes out to both of you on the tragic loss of your young son. No sorrow rivals that of parents who have had a child die. I don't have words to comfort you. Celiac disease, once thought of as a curious and rare disorder, is now recognized as being quite common. It's an illness that comes about from some people's inability to tolerate gluten, a protein found in wheat, barley and rye. Gluten acts as a poison to these people's small intestine. It makes them unable to absorb food. The result is diarrhea, weight loss, fatigue, abdominal cramps and deficiencies of vitamins and minerals.

Eliminating the grains that contain the gluten protein brings recovery. It calls for a radical change in diet, and that is no small task.

I must admit I did not know the statistics on death from untreated celiac disease. After reading your letter, I carefully reread the celiac sections in three recently published, comprehensive internal-medicine textbooks, one newly printed pathology text and an upto date review of the illness, and none mentioned the death rate in untreated celiac disease. Yours is a message that needs to get out.

Two national groups provide help and information on this illness. They are the Celiac Disease Foundation, 13251 Ventura Blvd., Suite 1, Studio City, CA 91604 (www.celiac.org), and the Celiac Sprue Association, Box 31700, Omaha, NE 68131 (www.csaceliacs.org).

Dr. Donohue regrets that he is unable to answer individual letters, but he will incorporate them in his column whenever possible. Readers may write him or request an order form of available health newsletters at P.O. Box 536475, Orlando, FL 32853-6475.