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It wasn't just stomach pain, but a disease

After years of suffering and misdiagnosis, a woman discovers her diet was to blame.

September 01, 2003|Martin Miller | Times Staff Writer

Jackie Rosenblum always had stomach problems. On the worst days, a rumbling, burning, stabbing sensation in her abdomen could fold her over in pain.

For years, the Bell Canyon resident had written it off as simply nerves or cramps. But during her second pregnancy a little more than seven years ago, the now 36-year-old developed another symptom, a scorching rash over much of her body, including her eyelids.

"I had one dermatologist tell me I was allergic to being pregnant," said Rosenblum, who delivered a healthy baby in spite of her complications.

After a host of incorrect diagnoses, Rosenblum finally found out what was behind her troubles -- celiac disease, a condition that is estimated to afflict 1.5 million people nationwide. Also known as celiac sprue or gluten-sensitivity enteropathy, celiac disease is a lifelong digestive disorder caused by the body's reaction to gluten, a substance found primarily in wheat products.

The symptoms of the autoimmune disease can vary greatly; they include severe diarrhea, weight loss, abdominal pain, gas and bloating. But whether the symptoms are mild or intense, bodily damage is still being done, according to the Celiac Disease Foundation, a nonprofit group based in Studio City. The disease can harm tooth enamel, bones and joints and cause fatigue, infertility and depression. It also increases the risk of anemia, intestinal lymphomas and other autoimmune diseases such as Type I diabetes and rheumatoid arthritis.

"Some can eat gluten and not have symptoms. Others eat it and within hours they are vomiting," said Michelle Pietzak, the director of the Center for Celiac Research-West at Childrens Hospital Los Angeles. "For some patients, it can be similar to having an infection with cholera."

The disease's destructiveness is made worse because it frequently goes undiagnosed. Medical schools usually dismiss the disease as either a passing condition of childhood or a rarity among adults. Further, its symptoms are similar to those of more common disorders such as irritable bowel syndrome, making diagnosis difficult. The average diagnosis time is 12 years, according to the foundation.

"It's one of the most under-diagnosed diseases there is," said Elaine Monarch, executive director of the Celiac Disease Foundation, who estimates that more than 22,000 people in the Los Angeles have the condition but are unaware of it. "Doctors just aren't looking for it."

Half a dozen of Rosenblum's physicians missed the disease. After CT scans, MRIs and other examinations and tests, she was told she had everything from a vitamin K deficiency to Epstein-Barr syndrome. Finally, after she developed migraine headaches, a physician said he thought she might have celiac disease.

"I said, 'What's that?' " remembered Rosenblum. "I didn't know what it was and unless someone sits you down and really explains it to you and what you need to do, it's confusing."

Rosenblum remembered the physician, a migraine specialist, directing her simply to "not to eat bread," but she didn't receive more information about the disease. For three more years, she didn't follow a gluten-free diet and her symptoms got worse.

"If I went out for Chinese food, I'd eat fried rice anyway," said Rosenblum, who didn't know that soy sauce could be a problem. "I just thought whatever harmful stuff was in there would get cooked out."

Her migraine headaches continued and when they struck, she couldn't be in a room with lights, and, at times, couldn't even finish a sentence. Then one day she was driving with a migraine and made a left turn into oncoming traffic. "I'm lucky to be alive," said Rosenblum (no one was injured in the incident).

The episode, however, prompted a visit to a neurologist, who made the correct diagnosis and stressed the necessity of avoiding gluten. The protein somehow triggers a reaction that causes the immune system to attack the small intestine. The result is inflammation and a progressive loss of the tiny brush-like folds that allow food to be efficiently digested.

"If you have to choose an autoimmune disease, this is a nice one," said Pietzak, an assistant professor of pediatrics at USC Keck School of Medicine and a pediatric gastroenterologist at Childrens Hospital Los Angeles. "This is the only one with a cure."

The remedy is simple -- don't eat gluten -- but it requires major culinary changes and due diligence, said Rosenblum. Celiac patients are instructed to read food labels to make sure there is no gluten -- an ingredient found in wheat, rye and barley products. Patients typically must purchase food from special markets and bakeries. "When you first hear the news, you feel like you're suffering a loss," said Rosenblum. "But it certainly could be a heck of a lot worse. All I have to do is change my diet."

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