Diagnosing Celiac Disease: A Long Battle
Celiac Disease Is often misdiagnosed.
[Updated June 12, 2017]
Celiac disease is more common than most people think – and may show up in unexpected ways. Experts in 2007 estimated that approximately 1 in 100 Americans have the condition but only 3 percent have been diagnosed.
Although awareness of the disease in this country has increased exponentially, at least one study reports that it can still take up to 11 years for some to be diagnosed. This may be due to the fact that celiac disease can present with a wide range of subtle to serious symptoms – from migraines to seizures, from diarrhea to dementia. Also delaying diagnosis is the fact that many doctors still don’t think to suspect gluten sensitivity unless a patient has obvious gastro-intestinal complaints. Yet recent studies indicate only 30 percent of the people with gluten sensitivity have classic GI symptoms.
Celiac disease can mimic symptoms of other disorders, like lupus, and is associated with autoimmune diseases like Type 1 diabetes, rheumatoid arthritis and Down’s syndrome (see table below).
“It makes the most sense to me to view gluten sensitivity as having three different presentations which may or may not coexist,” says Heidi Schwarz, M.D., a neurologist at the University of Rochester Medical Center in Rochester, New York. That’s “enteropathy, celiac disease in the traditional sense; neurologic disease with multiple manifestations, not just ataxia; and skin problems or dermatitis herpetiformis.”
Mike Tetlow, 47, or Fairport, New York, is convinced he’s been gluten sensitive since he was a child – only no one knew it. At 17, he was diagnosed with polymyositis, a debilitating muscle disease.
“I remember playing hoops at a neighbor’s house and trying to make a basket at the foul line and just couldn’t do it,” he recalls. “I tried to do a pushup and basically fell on my face. I just got weaker and weaker from that time on.”
A three-year regimen of prednisone cleared up the polymyositis but other mysterious symptoms continued to plague him for years – nausea, occasional black-outs, ongoing anxiety, spots in his vision and other strange eye problems.
“I’d look at somebody with a checkered shirt and I’d see it shimmer. If I looked at horizontal blinds, they’d look like they were shimmering,” he says. “I started getting this sensation of my vision lagging when I moved my head back and forth.”
Later, bouts of intense dizziness became so debilitating that he was forced to give up driving and eventually had to leave his job.
After years of doctors’ exams, scores of medical tests and even brain surgery to remove a benign tumor, Tetlow’s symptoms continued. It wasn’t until he began complaining of digestive problems in 2001 that he was finally diagnosed with celiac disease and gluten ataxia.
“Without the intestinal symptoms I developed six years ago, I probably would not have been diagnosed,” he says.
Now on a strict gluten-free diet, Tetlow is hopeful that he will recover his former strength. Well read and fully aware of many of the aspects of gluten sensitivity, he looks back on his childhood and clearly sees the signs.
“I now know that polymyositis can be associated with celiac disease,” he says. “I was pretty small in stature, like 5 foot 71⁄2 inches, one of the shortest guys in high school, and pretty slow to hit puberty. Now I know these can all be indications of celiac disease. I sure wish they’d known more about gluten sensitivity back then.”