Celiac Disease Specialist Pawtucket RI

The Great Pretender

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By James Keough

People with celiac disease in the US wait nine years on average before they receive a confirmed diagnosis. During that time their symptoms get attributed to everything from irritable bowel syndrome to emotional problems. They collect specialists and receive countless dead-end treatments before someone finally suggests testing for celiac. Others suffer for years without seeking help, thinking their sensitive gut is the norm, that it runs in the family, and that they’ll just have to live with it. And many of them do until later in life, when a malignancy or the onset of a chronic disease like diabetes leads to the discovery of celiac.

It needn’t be that way. A simple blood test can point to the presence of the disease, and a routine biopsy will confirm a diagnosis. Misdiagnoses (or a lack of diagnosis) arise because celiac can mimic a large number of other illnesses, even though it is said to present a set of classic symptoms: abdominal cramping, gas, abdominal distention, and/or bloating; chronic diarrhea or constipation (or both); steatorrhea (fatty stools); unexplained anemia; and weight loss despite a large appetite or weight gain. But many celiacs don’t suffer intestinal distress. Instead they experience joint pain, fatigue, lack of energy, weakness, headache, neurological problems, depression, infertility, dental enamel defects, aphthous ulcers, or an incredibly itchy, blistery skin rash called dermatitis herpetiformis.

The more one reads about the disease, the more symptoms join the list. The difficulty for patient and doctor lies not just in connecting the dots—sometimes the dots are totally random or, worse, never show up at all. “To my mind it’s in the wrong part of the medical textbooks,” says Peter Green, MD, coauthor with Rory Jones of Celiac Disease, A Hidden Epidemic (Collins, 2006). “It should be in the multisystem-disorder chapter like lupus. It’s all a matter of awareness.”

Just What Is Celiac Disease?
Also known as celiac sprue or gluten sensitive enteropathy (and called coeliac outside the US), celiac disease is a hereditary autoimmune disorder that targets the lining of the small intestine. Celiac differs from other autoimmune diseases in that researchers have identified an environmental cause—unlike diabetes for instance—and it has a known cure. The cause is a protein found in wheat and other cereal grains. In wheat it is called “gluten,” and that has become the generic name for the similar proteins in rye (secalin) and barley (hordein), which also cause the disease. “We didn’t evolve to eat wheat,” says Green. “Man’s been around for 100,000 years and wheat only appeared 10,000 years ago, so our digestive system evolved not eating wheat.” According to an article in the New England Journal of Medicine by Alessio Fasano, MD, epidemiological studies during the last decade have “revealed that celiac disease is one of the most common lifelong disorders in both Europe and the US.”

While gluten “causes” ...

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