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University of Chicago Celiac Disease Center

Are you one of the 97% of people with celiac disease who don’t know it?

by Tavaner K. Bushman and Virginia Brown
Nov 16, 2010


University of Chicago Celiac Disease Center, Centers for Disease Control and Prevention

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University of Chicago Celiac Disease Center

 The celiac iceberg image breaks down different versions of the disease. All the people included in the iceberg have the genetic predisposition for celiac and tested positive for antibodies in the blood test. Those with a positive blood test and biopsy, and symptoms are above the water line. They have symptomatic celiac disease. People who have positive blood tests and  biopsies but no symptoms have "silent" celiac disease. Those with latent celiac disease test positive for the blood test but negative for intestinal damage.

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Living gluten free: What you can eat.

Celiac disease is the world’s most common genetic autoimmune disorder, and it’s 10 times more prevalent than Type 1 diabetes, said Carol Shilson, executive director of the Celiac Disease Center at the University of Chicago.

But have you ever heard of it?

“Celiac disease does often go undiagnosed for many years due largely to two factors,” said Dr. Ciaran Kelly, director of the Celiac Center at Harvard Medical School. First, its clinical presentation, signs and symptoms are diverse and non-specific leading often to false diagnoses.

Additionally U.S. physicians are often unfamiliar with celiac disease diagnosis.

“Celiac disease was discovered in Greek and Roman times,” Shilson said. “It was always known in Europe and it was taught to physicians in their regular schooling.”

But for some reason, until recently, textbooks in the U.S. portrayed celiac as a very rare disease, she said.

Celiac disease affects about 1 percent of the U.S. population, Kelly said, and a large majority - more than 90 percent - are currently undiagnosed.

Shilson, 41, who has celiac disease, struggled with symptoms for more than 10 years.

“I went to countless doctors. Nobody knew what was wrong with me,” she said. “They all told me I had a really stressful job and I probably had irritable bowl syndrome.”

Her ailments finally got so vast and vague - in addition to gastrointestinal symptoms such as diarrhea and constipation, her joints started to swell and she had numbing in her fingers and toes, she said.

Eventually, Shilson’s niece was diagnosed with celiac, and Shilson’s sister suggested she get tested. All three tests for celiac - genetic screening, an antibody blood test and a biopsy of the intestine - came back positive, she said.

Determining if a person has the celiac gene can be a good first step in testing for the disease. If the genetic test is positive, an antibody blood test is given, which shows if the disease is active at the time of the test. People with celiac disease who eat gluten have elevated levels of certain antibodies in their bloodstream. Antibodies are produced by the immune system in response to a substance it thinks is threatening. If the blood test is positive, a biopsy of the small intestine is performed to determine if there is damage.

Because many people with celiac have no symptoms at all, and because the disease is genetic - a person must have the gene to develop the disease - the ideal way for experts to diagnose celiac would be to screen for the gene in first-degree relatives of someone recently diagnosed, Shilson said.

When Shilson’s son, 2, was a week old, he was tested for the celiac gene celiac. Unfortunately, he has the gene, but does not yet have the disease, she said. But he has to take the antibody blood test every two to three years, or immediately if she notices any symptoms, she said.

Symptoms of celiac include recurring abdominal pain and bloating, chronic diarrhea and constipation, vomiting, weight loss, iron-deficiency anemia that does not respond to iron therapy, fatigue, joint pain, tingling or numbness in the legs, tooth discoloration and loss of enamel, and unexplained loss of fertility, according to David Elliott, director of the Inflammatory Bowel and Celiac Disease Center at the University of Iowa.

Another common symptom of celiac disease manifests as an itchy, blister rash, usually present on the scalp, thighs and forearms, known as dermatitis herpetiformis, Elliott said.

Symptoms, such as severe diarrhea, also known as sprue, can be extremely debilitating and leave a patient in a near death situation, he said.

Celiac is often referred to as a “wasting illness” because it leads to the malabsorption of critical nutrients the body needs to perform at an optimal level, Elliott said.

Since 1974 the incidence of celiac in the U.S. has doubled every 15 years, according to a new study led by Dr. Alessio Fasano, director of the University of Maryland’s Mucosal Biology Research Center and the celiac research center. The study found the incidence of celiac rose as much as two and a half times as people in the study aged. This finding challenges the common belief that celiac develops during childhood.

The activation of the disease is caused by a stress to the immune system - a pregnancy, a surgery, an infection, all of a sudden the immune system is so taxed it triggers the disease, Shilson said.

There is evidence that the increased prevalence of celiac is not due to better diagnosis, Elliott said. Most autoimmune and inflammatory diseases are increasing in prevalence, which suggests something has changed that makes people more susceptible to developing autoimmune or inflammatory diseases such as celiac, he continued.

One of the leading theories for the increased prevalence of autoimmune disorders is that our environment has become so hygienic that our immune response system does not develop correctly, he said.

Although celiac disease is often called a gluten intolerance - a generic term used to describe any adverse reaction to gluten - it distinctly differs from gluten sensitivity and other food allergies.

Celiac disease is an autoimmune disorder in which the body destroys its own healthy tissue. When a person with celiac eats gluten - a protein found in wheat, barley and rye - it causes the immune system to attack the small intestine, inhibiting its ability to absorb nutrients and potentially causing long-term damage.

A gluten sensitivity is an abnormal reaction to gluten that involves the gastrointestinal tract, not the immune system. Similar to lactose intolerance, someone with a gluten intolerance may experience uncomfortable abdominal pain, bloating and gas for a short period of time, but no real damage is done.

And a food allergy is a negative response to a trigger food by the immune system to fight the problem food because the immune system has decided the food is dangerous. For example, when someone with a peanut allergy consumes peanuts, antibodies and histamine are released to fight the peanuts, which can lead to anaphylaxis - severe body shock - that can result in death.

For a person diagnosed with celiac, when gluten is consumed, the immune system does not attack the gluten, but its own tissue.

Other autoimmune disorders include rheumatoid arthritis, which affects the joints; multiple sclerosis, which affects the brain and spinal cord; and lupus, which may affect the skin, joints and organs.

As of now, there is no cure for celiac disease. But a team of researchers at the University of Chicago led by Bana Jabri is looking for an answer.

Jabri created the first complete mouse model of the disease, in which she was able to re-create all components of the disease in a mouse, Shilson said. Researchers are trying to understand what happens in the moment the disease is triggered - goes from a genetic predisposition to a disease - so one day, they might be able to turn it off, she said.

“The best treatment is a gluten-free diet,” Elliott said, adding that 20 years ago, it was hard to maintain a gluten-free diet, but now with helpful tools such as improved food labeling and instructional books such as “Celiac Disease for Dummies,” living a normal life free of gluten is more easily accomplished.

The first step for someone diagnosed with is to eliminate foods that contain gluten, said Pam Cureton, a dietitian at the University of Maryland Center for Celiac Research. Cureton works with celiac patients to function in a world of wheat - to focus on the what, the where, to read labels, how to prevent cross contamination, and how to eat out, she said.

For most people who suffer from celiac, their gluten threshold – the amount of gluten their body is able to tolerate – is 10 milligrams, about 1/8 teaspoon of flour, Cureton said.

It can take up to six months for antibodies to return to normal levels once someone with celiac starts eating a gluten-free diet, and even longer to repair the intestines – possibly up to two years and maybe never, Cureton said.

It is a great time to be diagnosed with celiac because there is so much awareness and food available for people with celiac, Cureton said. An abundance of great tasting gluten-free foods is available in grocery stores.

The gluten-free diet craze has helped to increase awareness of the disease, Shilson said.

“But is a very fine line where it’s not seen as a trivial fad, versus a quite serious medical treatment for a lifelong disease.”