Hello Celiac Disease, Goodbye Gluten
Until recently, "celiac disease" was far from a household phrase. These days, it's not uncommon to hear about it in conversations at the office or the gym. The National Institutes of Health estimate that one in 133 people in this country have some form of this disease.
Celiac disease results from an intolerance to a protein called gluten found in wheat, rye and barley, according to Mike Leonis, MD, PhD, research instructor in pediatrics in the Division of Gastroenterology, Hepatology and Nutrition at Cincinnati Children's Hospital Medical Center. Why the numbers are rising is not clear – perhaps increased incidence or better reporting, he says.
"We don't know why children develop it but we know there is a genetic susceptibility to it, and if they have close relatives with the disease, they run a higher risk of developing it themselves."
Diagnosis Is Difficult
There are many problems in diagnosing celiac disease.
"We used to think everyone with celiac disease would have severe symptoms, but we now know they can have mild symptoms – such as frequent diarrhea or abdominal pain – or maybe no symptoms at all," says Dr. Leonis.
The widely varying symptoms can mask the disease. The list includes:
- Excessive gas
- Abdominal pain
- Diarrhea
- Constipation
- Weight loss or gain
- Fatigue
- Bone or joint pain
- Behavior changes
- Muscle cramps
- Itchy skin rash
"It's hard to diagnose before about 6 months because the child needs to have been exposed to wheat and other grains," says Dr. Leonis. "Usually children come for testing because of chronic belly pain, diarrhea or poor weight gain."
Doctors screen for the disease with a blood test. If the test is positive, they perform a biopsy of the small bowel to see if villi, small protrusions in the lining of that organ, have been damaged. Without healthy villi, the body cannot absorb nutrients so the child becomes malnourished.
One Treatment That Works
"Once diagnosed, the only proven effective treatment is to eliminate all gluten from the diet," says Dr. Leonis.
Maintaining a gluten-free diet can be a challenge since gluten is part of most foods children eat, such as bread, cereal, pasta, soups and even some medicines.
"It's hard for young kids and their parents. They have to read food labels very carefully," he explains. "Even a trace of gluten can have the same effect as eating a fast-food double-burger and bun."
With the help of nurses and nutritionists at Cincinnati Children's, families learn to adjust a child's routine and eating habits so they can live more comfortably. Some families "go gluten-free all the way," while some stock a gluten-free cabinet where they store special foods for the child with the disease, according to Dr. Leonis.
Children who test positive for celiac disease but show only minimal symptoms are more difficult to convince that a gluten-free diet is necessary, says Dr. Leonis. But without such a diet, they run the risk of long-term consequences, including osteoporosis, anemia and perhaps increased risk of cancer.
Even though children are never really cured of the disease, the good news is that once they maintain a proper diet, their small intestines heal in about three to six months so their bodies can absorb proper nutrients. As long as they maintain a gluten-free diet, they also get relief from the symptoms that led them to their doctor in the first place, usually chronic diarrhea, bloating and abdominal pain.
