Julie Gopp thought she had a sensitive stomach. Since her 20s
she had become progressively more nauseated, eventually dealing
with her queasiness as a 24/7 basis.
The 51-year-old homemaker suffered frequent diarrhea alternating
with crippling constipation, heart palpitations and an increasing
inability to eat.
Julie Gopp thought she had a sensitive stomach. Since her 20s she had become progressively more nauseated, eventually dealing with her queasiness as a 24/7 basis.
The 51-year-old homemaker suffered frequent diarrhea alternating with crippling constipation, heart palpitations and an increasing inability to eat.
“I would take a few bites and feel full or feel like I had to throw up,” said Gopp. “But I was gaining weight still. My doctor said it was my weight and that it was in my head, but when I tried to follow the diet he gave me I just got more sick.”
Her illness was blamed on a recurrence of her polio, on her weight, on her mind, but nothing she did seemed to help.
“I was passing quarter-sized clots of blood and my HMO said they couldn’t find anything,” said Gopp.
Fearing the worst, Gopp sought the help of a physician at Stanford, who decided to try something a little out of the ordinary. He tested her for celiac disease, also called celiac sprue or gluten-sensitive enteropathy. Despite the fact that 95 percent of the cases are hereditary, almost all occur in children and are accompanied by weight loss rather than weight gain. It came back positive.
Celiac disease is an intolerance to gluten, similar to type I diabetes. While the symptoms may be controllable, it puts sufferers at a lifetime of risk for anemia, osteoporosis and cancer.
Gluten itself is the glue-like protein contained in common grains like wheat, rye and barley as well as more obscure grain sources such as spelt, kamut and triticale. It can be found in unexpected foods – instant coffee, soy sauce, mustard powder, licorice and dried fruits – and household products – envelopes, make-up, shampoos and more
One out of every 133 Americans may have celiac disease, according to a 2003 study in the Archives of Internal Medicine, but it is hard to tell because the problem is grossly underdiagnosed. The average patient must wait 11 years for a proper diagnosis. Part of the problem lies in the fact that symptoms are often attributed to Irritable Bowel Syndrome in women who have no proven family history, who are overweight or who do not present signs of anemia. But getting a doctor to perform the tests, let alone diagnose a patient can be difficult.
Gopp has been gluten-free for more than two years. When she couldn’t get her HMO to stand behind her, she took matters into her own hands and said the decision changed her life. Within three days she felt as if her nausea had cleared. She stopped bleeding six weeks into the diet and has since regained the ability to touch her own stomach. It was too painful before.
“It’s very difficult to eat out, but better than being sick,” said Gopp. “When you want to try something at the store, you have to call manufacturers all the time. You can’t buy things without getting an 800 number. I’ve been given medicine that had gluten in it where the doctor didn’t realize.”
Still locking horns with her HMO, Gopp is hoping to be diagnosed, not for her own treatment, but so that her medical provider will test her daughters, who will soon be old enough to begin experiencing adult symptoms of the disease if they did indeed contract the problem.
If you are concerned about yourself or your child, consult a physician about the possibility of celiac disease. For more information, visit www.celiac.org, www.csaceliacs.org or www.gluten.net. For those with gluten allergies who want to eat out, call ahead. Restaurants like Outback Steakhouse and P.F. Chang’s offer gluten-free menus upon request.
