(December 8, 2003) Hear the audio version

My 13-year-old daughter nearly died of malnutrition before she was two. She looked like a starving baby on the Nightly News: bloated tummy, stick legs, blank facial expression. After watching our child waste away even after 54 doctor visits, three hospitalizations and 17 blood tests, we heard from a friend down in Southern California about gluten intolerance. I mentioned it to our doctor-of-the day, and for the first time a physician stepped back and looked at our child instead of her chart. “You know what?” he said. “She does look like a sprue kid.” Bingo! Five days later she was diagnosed with celiac disease, sometimes called celiac sprue. All she needed was a diet free of the gluten in wheat, barley and rye. 

I wish I could say that delayed diagnoses such as my daughter’s went out with the 20th century. Sadly, that’s not so. Most physicians still believe celiac disease is rare, when in fact research confirms an incidence in this country of one out of every 133 people. It is a chronic, genetic autoimmune disease that can show up at any age. Doctors have been taught it’s difficult to diagnose because not all celiacs have obvious gastrointestinal symptoms. Some are just horribly fatigued, or short in stature. But a simple blood test for celiac antibodies is a safe and accurate screening device, and should always be considered for patients with a bloated stomach and signs of malnutrition. Last week I met a newly diagnosed teenage celiac who looked like a concentration camp victim. It had taken her more than six weeks to be referred to a gastroenterologist, who tested her immediately.

Of course there are physicians who diagnose celiac disease even before their patients become seriously ill. But when doctors don’t consider it, then we as patients and parents need to insist on the screening test if we suspect gluten intolerance. Untreated celiac disease not only makes a person feel crummy, it can also lead to diabetes and other autoimmune diseases, as well as cancer. People deserve to know if their food is poisoning them.

With a Perspective, I’m Debbie Duncan.