Accessibility links

Breaking News

An Ancient Genetic Disorder Gets Modern Day Attention

For thousands of years, human beings have suffered from a genetic disorder that has received attention only in the last few decades. The disorder is called celiac disease and it is triggered by eating something as basic as a slice of bread. VOA's Melinda Smith has more on this debilitating illness and what is being done to treat it.

A trip to the grocery store can sometimes take hours for Anna Quigg. She must carefully read the ingredients itemized on the side of the food product, making sure that no wheat, barley or rye is used.

"So you definitely know that you can't have soups with noodles in them,” says Anna, “but you also have to be careful about soups that have a thicker sauce and some other soups because they often use wheat or wheat flour to thicken them."

These grains contain a protein substance called gluten, a binding agent used in everything from soup to ice cream, to ketchup. Sometimes the clues she looks for are not so clear.

"So it would say 'modified food starch' and you wouldn't know if that was from corn, which would be fine, or if that was from wheat or barley. You'd have to call the manufacturer and find out, and a lot of the times the manufacturer would say, ‘Well, if you give us the barcode on that specific one, I can tell you whether that specific one is okay. But our sources change, and so sometimes we change from wheat to corn.' You know, so then it gets more complicated," explains Anna.

As a teenager, Anna Quigg was diagnosed with joint pain, a racing heartbeat and severe anemia. Over time she developed gastrointestinal problems. Mealtime -- especially when away from home -- became an ordeal until a friend suggested she be tested for celiac disease.

"You realize over 11 years how you've changed your lifestyle only after you've started feeling better and realized that not everybody goes right home after dinner, and not everybody has to know where all the bathrooms are all the time."

Celiac sufferers often experience diarrhea, weight loss, abdominal pain, chronic fatigue and malnutrition. The intestine is ultimately damaged.

This gluten intolerance is thought to have evolved from the early development of agriculture. It was first recognized in Europe. It has recently been diagnosed in North and South America, India and surprisingly, among a group of Saharan refugees. The "Saharwee", as they are known, did not have the disease until humanitarian groups began delivering wheat and other affected grains.

Dr. Carlo Catassi has worked with the "Saharwee." "We found that 5.6 percent of the general pediatric population is infected with celiac disease, one in 18 children, which is a tremendous load of disease, a tremendous burden of disease in this population."

Doctors Carlo Catassi and Alessio Fasano are two of the world's top experts on celiac disease. Their research in Ancona, Italy and at the University of Maryland in Baltimore has focused on potential treatments -- a pill or vaccine. Dr. Fasano says until either is available, celiac patients have only one option -- a restricted diet.

"One of the most enjoyable and natural activities of humankind, that is, eating, will become a very time consuming, mental exercise that sometimes can have implications in your behavior,” explains Dr. Fasano, “because that can make you really stressed and depressed."

A positive diagnosis of celiac disease is made from a blood test and possibly a biopsy from the intestine. But it may not be possible to conduct either of these medical procedures in remote areas around the world. In the meantime, celiac experts are warning relief organizations about the risks of sending wheat abroad.