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Coping with the new normal for Celiac disease sufferers

Hernando Today Correspondent

Published:   |   Updated: August 26, 2013 at 12:11 PM

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Whenever Megan Wilson consumed certain foods containing wheat products, she would get bloated, feel gaseous, and experience sharp pains in her lower abdomen. A trip to her primary care physician suggested her symptoms were caused by gluten intolerance. A blood test determined Wilson had celiac disease.

"The reactions were particularly painful," Wilson explained, causing bouts of diarrhea and abdominal pain and weakness. She would be in bed for days at a time as her body recovered. She suspected there was a correlation with the foods she was eating but was surprised to learn her intolerance was serious enough to lead to further complications with her health and could lead to death.

According to the National Institute of Health, one out of every 133 Americans (about two million) have celiac disease. It is estimated that 97 percent of cases are undiagnosed. Further, roughly 30 percent have the inherited gene, which is expected will lead to between 4 and 12 percent of first-degree relatives also having the gene.

It also is estimated that as many as 60 percent of children and 41 percent of adults who suffer from celiac disease are asymptomatic or experience no known symptoms.

The National Foundation of Celiac Awareness defines celiac disease as "an autoimmune digestive disease that damages the villi of the small intestine and interferes with absorption of nutrients from food." The disease is triggered when the protein gluten, found in wheat, barley and rye, is consumed.

When gluten is consumed by suffers of celiac disease, their bodies respond by attacking the villi in the small intestine and damaging them to the point where the body cannot absorb the nutrients into the blood stream.

Celiac disease, if left untreated, can lead to:

Iron deficiency anemia

Early-onset osteoporosis or osteopenia

Vitamin K deficiency associated with risk for hemorrhaging

Vitamin and mineral deficiencies

Central peripheral nervous system disorders

Pancreatic insufficiency

Intestinal lymphomas and other GI cancers (malignancies)

Gall bladder malfunction

Neurological manifestations

Celiac disease is diagnosed through a series of blood tests, which will measure the body's response to gluten. It is important that the patient continue eating a normal gluten-containing diet before being tested for celiac. If the results along with symptoms seem to indicate celiac disease, a biopsy of the lining of the small intestine might then be ordered to confirm the diagnosis.

Once accurately diagnosed, the only treatment for celiac disease is a life-long gluten-free diet. Therefore, it is important to eliminate all foods that contain wheat (including spelt, triticale and khorasan), rye and barley.

Despite restrictive diets, it is becoming easier than ever to find gluten-free products as more industries jump onboard with choices.

But not all gluten intolerances are due to Celiac disease. Research has found that 18 million Americans suffer from non-celiac gluten sensitivity, which is six times more than those who suffer from the actual disease.

Typically non-celiac gluten sensitivity is diagnosed when the blood test for celiac disease comes back negative but the patient still has symptoms relating to gluten intolerance. It describes those individuals who cannot tolerate gluten but lack the antibodies and intestinal damage seen in celiac disease.

Whether suffering from celiac disease or non-celiac sensitivity, patients must be vigilant in changing their eating habits to avoid gluten.

For Megan Wilson, adapting to a gluten-free lifestyle has become her new normal. "I listened to the suggestion to stay away from high gluten foods," she said. "Pasta especially will get my stomach hurting."

Visit the National Foundation of Celiac Awareness at

Hernando Today correspondent Kim Dame can be reached at dame

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