Jennifer Shea suffered for three years with fatigue, weakness, chronic untreatable diarrhea and dehydration. Her condition worsened even though she was under the care of a doctor who diagnosed her with irritable bowel syndrome.
At the same time Shea’s daughter Christine, 13, was having blinding headaches and stomach discomfort that made her a frequent visitor of the school nurse. She was being treated for stress.
“We were both ill, but I did not tie it together until I was diagnosed,” said the Clinton mother of four.
Shea was finally so weak and dehydrated that she sought help at the Emergency Room of University of Washington Hospital.
Fortunately for Shea, the doctor on duty recognized her symptoms and tested her for Celiac Disease, a genetic disorder that prevents the body from absorbing nutrients.
It is not an uncommon malady. According to a 2000 study by the University of Maryland, about one in 125 to 200 people have CD.
The cause of CD, also called celiac sprue or gluten-sensitive enteropathy, is unknown. However, when people with CD ingest gluten, the tiny villi — hairlike projections in the small intestine that absorb nutrients from food — shrink or disappear.
Shea likened its effect on the villi to a lawnmower cutting grass.
“I was suffering from malnutrition, basically starving to death,” she said. “My heart was under severe stress from the dehydration and I had significant bone loss.”
Following her diagnosis, Shea had her children tested and found that daughter Christine also suffers from CD. They immediately stopped eating food that contains gluten and found that their health bounced back quickly.
Gluten is found in all forms of wheat and other grains. The cereal aisle is almost totally for the Shea family now. The first aisle Shea heads for in the grocery store now is the natural foods section.
“I can find a number of products here that are okay for us to eat.”
Since their diagnosis with CD three years ago, Shea has made a few lifestyle changes. She went back to college and became a dietary technician and now works at Providence Hospital in Everett. She is also a contact for others who have been diagnosed with CD.
“When I was diagnosed I was given a one page list of foods that were okay for us to eat,” she said. “Obviously that wasn’t enough of a selection.”
She also remodeled her kitchen so that she has one entire wall of cupboards for gluten-free products and a second oven to avoid contamination.
Adapting to the gluten free diet required some lifestyle changes.
Shea and daughter Christine have become detectives carefully reading labels of products in grocery stores and contacting food manufacturers for lists of ingredients.
Gluten has many different names and is in many food products, the most obvious and common of which is bread. Some other names for gluten are malt, modified food starch, natural flavorings, brown rice syrup, malt flavoring and sometimes carmel coloring. Beer and some hard liquor contain gluten. Gluten is also used as a binder in some pharmaceutical products.
Shea said the Food and Drug Administration can provide that information on these products, as can local pharmacists.
Among the products the Sheas buy are pure oats from Ireland, corn, buckwheat, tapioca, quinoa and millet. Canned soups and lunch meats are out. For ice cream, they have to turn to more expensive brands like Dreyers and Breyers. Junk food is also largely out of their diet.
Though the symptoms of CD seem evident, Shea cautions people not to self- diagnose themselves.
“The only way to know for sure is by having the appropriate blood test.”
Other symptoms related to CD are dental enamel defects, bone or joint pain lack of energy infertility and depression. Other conditions that can arise from the disorder include iron deficiency, anemia, osteoporosis, central nervous systems disorders, and other food sensitivities.
