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Against the grain: The growing awareness of celiac sprue
      08/12/03 12:12 PM

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Against the grain: The growing awareness of celiac sprue

The wide-ranging symptoms of the disease can disguise the intestinal disorder, but new tests are helping to make diagnosis easier.

By Susan J. Landers, AMNews staff. Aug. 18, 2003.


True or false: Celiac disease is rarely seen in the United States. When Alessio Fasano, MD, born, raised and medically trained in Italy, first arrived on American shores, he would have said "true" without hesitation.

The intestinal disorder was common in his native country. One of his medical school mentors was an expert in the condition. And he already had treated celiac patients of all ages with a wide variety of symptoms ranging from diarrhea and abdominal pain to constipation, osteoporosis, anemia and even behavior changes.

But it also was widely accepted that Americans almost never harbor this illness, which is triggered in genetically susceptible people by gluten-containing foods. Dr. Fasano looked forward to the different experiences he thought would accompany his new position as professor of medicine, pediatrics and physiology at the University of Maryland School of Medicine in Baltimore.

Instead, he almost immediately began seeing patients who had the very familiar range of complaints.

Now, Dr. Fasano co-directs the University of Maryland's Center for Celiac Research and focuses on spreading a different truth among primary care physicians. Celiac disease actually is one of the most common lifelong disorders in the United States -- American doctors just had not been trained to look for it.

This task -- making physicians more aware about celiac disease -- runs counter to much of American conventional wisdom about the disorder's incidence. Thus, Dr. Fasano and colleagues decided that mounting a large-scale study was necessary to gather the evidence that celiac disease affected many patients.

One in 133 Americans is at risk for celiac disease.
They hypothesized that because the necessary components for the disease almost certainly were present in the United States -- both the genetic background and the gluten trigger -- there either was a third element at work that prevented the interplay of the components or the disorder was being overlooked.

After screening more than 13,000 people in 32 states, they found that the latter assertion proved true. One in 133 Americans is at risk for celiac disease.

Those figures, published in the Feb. 10 Archives of Internal Medicine, demonstrated a tremendous increase from the one in 4,700 Americans who had been diagnosed up until that point. Estimates of the prevalence of celiac disease, also called celiac sprue, now range from one in 100 to one in 300.

"Whichever way you look at it, it's a very large number of people," said Chaitan Khosla, PhD, a professor of chemistry at Stanford (Calif.) University, who started the Celiac Sprue Research Foundation after his son and wife were diagnosed with the disease.

The disorder also can be found in many of the world's populations, he said, "pretty much all the way from the Indian subcontinent to Eastern and Western Europe as well as Northern Africa."

The fact that it is not always recognized in the United States doesn't surprise Joseph Murray, MD, professor of medicine at the Mayo Clinic in Rochester, Minn. Originally from Ireland, where celiac disorder is considered a very common ailment, and trained in medicine at the University of Galway, he never expected to confront the disease again once he arrived in the New World. "I came to study another part of the digestive system, and celiac disease kind of came along and bit me on the leg."

Celiac disease is often overlooked in the U.S.
He attributes celiac's lack of American celebrity to the fact that there are a lot of diseases, and places in the medical school curriculum are reserved for those that are either very big, such as cancer or heart disease, or very noticeable.

"It has to be a classic something," he said. Celiac disease doesn't fit this description -- it often presents atypically, "so it's not what you're expecting."

Others would agree. "It falls into that category of squirrelly disorders that show themselves in many different ways," Dr. Khosla said. Dr. Fasano described it in the June 19 New England Journal of Medicine as a "clinical chameleon."

Despite this shifty nature, celiac disease can be suspected if a patient complains of chronic diarrhea that's been going on for several weeks; has other autoimmune diseases such as type 1 diabetes, thyroid disorders, some types of arthritis or lupus, or if they have a family history of those disorders; or is anemic and the condition cannot be easily explained, Dr. Murray said.

Dr. Fasano defined the disease even more broadly. "You can have vomiting, bloating or constipation, or you can have symptoms that have nothing to do with the gastrointestinal system, such as chronic fatigue syndrome, joint pain, osteoporosis, depression or miscarriage."

Many people with the disorder go undiagnosed for years. The typical time between the onset and diagnosis in the United States is 11 to 13 years. Sometimes the disease is triggered by severe emotional stress, surgery, pregnancy or viral infections.

The disease is split about 50/50 between being a disease of children and a disease of adults, Dr. Fasano said. In textbooks, it is likely to be described as a pediatric condition with the typical symptoms of diarrhea and big belly developing a few weeks after grains are introduced into a child's diet. If there is anything like a classic form of this condition, it is the one diagnosed in very young children.

"During the past two decades, however, the clinical picture of the disease has changed to include milder forms, thus resulting in an upward shift of the age at diagnosis," writes Maki Markku, MD, PhD, of the Pediatric Research Center in Tampere, Finland, also in the June 19 NEJM.

Testing one, two, three
The disease can be detected in patients via blood tests. And these readily available screens put the power to consider the disorder in the hands of the primary care physician.

That's a good thing, according to the experts. After all, it's the primary care physicians who are seeing most of the patients with celiac disorder, although they might not know it. "If a primary care doctor has 2,000 to 3,000 patients, then he or she is likely to have 10 or 15 patients with celiac disease. That's not a small number for a chronic disease," Dr. Murray said.

Celiac's only treatment is to avoid foods with gluten.
Negative blood test results can rule out the disease, while a positive finding indicates there's a good chance a patient has it.

But these outcomes are not entirely clear cut.

One problem with the blood test is that it will result in a negative finding if patients already have eliminated gluten from their diets.

A way to circumvent this problem is to order a DNA test, which doesn't require the presence of antibodies to gluten to confirm the presence of the disease. The diagnostic gold standard, however, is a biopsy of the intestine performed when a patient has eaten gluten-containing food and the resulting damage to the villi lining the intestine can be verified.

Dr. Khosla urges primary care physicians to consider sending patients for a blood test the day they present with symptoms and before they make dietary changes.

He would also like to see an even simpler pin-prick blood test developed as a diagnostic tool that could be on hand in every primary care physician's office. "But it is just not on the radar screen, because primary care physicians aren't saying they have a need for it."

Changes for life
Once diagnosed, the effective, albeit difficult, treatment is to avoid eating anything containing gluten. Foods that contain wheat, rye, oats and barley must be eliminated from the diet. There are also hidden sources of gluten in many foods and even in prescription medications. Labels sometimes identify them as "vegetable" or "plant" protein.

The good news is that avoiding gluten allows damaged intestinal villi to heal and an individual to fully recover. Advocates are lobbying Congress for passage of food labeling legislation that clearly indicates which foods are off limits. Europe has adopted a universal sign of wheat with a line through it to indicate safe products.

Dr. Khosla is very familiar with the implications of diet and the changes celiac disease has made necessary in his life. "We've learned to keep a gluten-free kitchen. I would say on average, if someone asked me the difference between my kitchen now and my kitchen seven years ago [before his son was born], the primary difference is higher grocery bills."

But these costs are nothing compared with the high price patients can pay if the disorder is not adequately diagnosed and treated. Quality of life is one thing. Stomachaches and gas make it hard for individuals to socialize. Additional consequences include short-term memory loss and depression.

Miscarriages and osteoporosis also are among the complications. Dr. Fasano recently spoke with a woman who was diagnosed with celiac disease at age 46. She had experienced nine miscarriages, and her diagnosis came too late to allow her to have children.

"I can't do anything for her now because she is in menopause and has lost the opportunity to have a baby," he said.

Lymphoma is the scariest complication of undiagnosed celiac disease, although it is extremely rare, Dr. Fasano said. "But the chances of developing other autoimmune diseases as a consequence of celiac disease, like type 1 diabetes, are well described," he said. "And that is a travesty."

There are efforts under way to find a cure other than dietary restrictions, and Dr. Khosla hopes to hasten its discovery through the work of his foundation. "If this was like GERD [gastroesophageal reflux disease] or any other gastrointestinal disorder for which there are good treatments, there wouldn't be any room for a nonprofit organization to do what is typically done by the pharmaceutical industry."

Others agree that an alternate treatment or even a cure is not impossible in the next five or 10 years. After all, celiac disorder is unique in that it is the only autoimmune disease for which all elements are known, Dr. Fasano said. The trigger, gluten, is well understood. And the genes involved, though there may be more, also are known, as is the part of the body that is attacked.

"For scientists, that is the blessing. I believe we will come up with a cure," he said.

That's what Dr. Khosla hopes is in store for his young son.

"I have a dream that when he goes to college in the fall of 2014, he takes with him a refillable prescription for a pill he can take whenever he finds himself in a situation where he cannot avoid, or does not wish to avoid, a gluten-containing meal."


Behavior change
Bone pain
Chronic diarrhea
Dermatitis herpetiformis
Joint pain
Muscle cramps
Pale sores inside mouth
Recurring abdominal bloating and pain
Tooth discoloration
Unexplained anemia
Weight loss
Source: National Institute of Diabetes & Digestive & Kidney Diseases


Blood tests are available to measure levels of antibodies to gluten, which is found in wheat, rye and barley, as well as other foods and some pharmaceutical products.
If the blood tests suggest celiac disease, a biopsy of the intestine would confirm the disease.
Blood tests and biopsy should be completed before an individual begins a gluten-free diet.
Source: National Institute of Diabetes & Digestive & Kidney Diseases


Celiac Disease Foundation (

Celiac Sprue Assn. (

University of Maryland Center for Celiac Research (

Celiac Sprue Research Foundation (


Copyright 2003 American Medical Association. All rights reserved.

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