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Daily bread dangerous for some

By: leigh Ann Laube

Celiac disease much more common today than 50 years ago; reasons unclear

Lauretta Marr grew up in California, the daughter of a dietitian, eating artichokes and lamb chops. A world traveler as an adult, she’s sampled foods from pretty much everywhere except Africa.

“Every food on Earth I grew up eating. I’ve lived on Indonesian food. I’ve eaten foods you would not believe you could eat,” she said.

Today, Marr’s diet is very limited — and usually the same nearly every day of the week.

“I’m not one of those people particularly excited about food. I could eat the same thing three times a day. ... My typical breakfast is dry cereal — gluten-free Rice Chex. Lunch is usually nachos with corn tortillas and cheese, and dinner is maybe a chicken salad or steak and baked potato. That’s what I eat six nights a week.”

On Mother’s Day last year, at age 70, Marr was hospitalized, so sick doctors weren’t sure if she would live.

“Doctors didn’t know what was wrong with me. They thought I might not come out of it. They did every blood test and found nothing.”

After an endoscopy and a biopsy of her small intestine, Marr was diagnosed with celiac sprue — also called celiac disease — an immune system reaction to gluten in the diet.

Marr, of Johnson City, was taken off gluten and her body began to slowly heal. “I’m still not back to par. I still lack the energy I should have,” she said.

One of Marr’s doctors started her on a rice diet, but then Marr met Marie Browning, a holistic nutritionist with a private consulting business, Healthier Solutions by Marie.

“I was in such poor health, and I called her,” Marr said. “I said, ‘I’m not doing anything except eating three different kind of foods a day.’”

With Browning’s help — and with support from Gluten Free Gatherings, a community program sponsored by Earth Fare Market in Johnson City in conjunction with Healthier Solutions by Marie — Marr and her husband have learned to read nutrition labels and avoid gluten.

“Believe you me, I haven’t touched gluten since,” she said.

Celiac disease was once thought to be very rare, Browning said, but on a weekly basis she meets with at least one client affected by gluten, whether they have celiac disease or suffer from gluten intolerance.

Celiac disease is more than four times more common today than it was 50 years ago, according to findings of a Mayo Clinic study published in the June issue of the journal Gastroenterology.

“Celiac disease has become much more common in the last 50 years, and we don’t know why,” said Dr. Joseph Murray, the Mayo Clinic gastroenterologist who led the study. “It now affects about one in a hundred people. We also have shown that undiagnosed or ‘silent’ celiac disease may have a significant impact on survival. The increasing prevalence, combined with the mortality impact, suggests celiac disease could be a significant public health issue.”

In patients with celiac disease, the presence of a protein called gluten from wheat, barley or rye triggers an immune system attack, damaging the villi in the small intestine. Villi are fingerlike projections that increase the intestine’s surface area for nutrient absorption. Celiac disease symptoms may include diarrhea, abdominal discomfort, weight loss, anemia, unexplained infertility, loss of teeth or even premature or severe osteoporosis.

“Celiac disease is unusual, but it’s no longer rare,” Murray said. “Something has changed in our environment to make it much more common. Until recently, the standard approach to finding celiac disease has been to wait for people to complain of symptoms and to come to the doctor for investigation. This study suggests that we may need to consider looking for celiac disease in the general population, more like we do in testing for cholesterol or blood pressure.”

Because celiac disease symptoms are variable and can be mistaken for other, more common, diseases, it can be a difficult disease to diagnose.

Symptoms in adults can include unexplained iron-deficiency anemia, fatigue, bone or joint pain, arthritis, bone loss or osteoporosis, depression or anxiety, tingling numbness in the hands and feet, seizures, missed menstrual periods, infertility or recurrent miscarriage, canker sores inside the mouth, and an itchy skin rash called dermatitis herpetiformis.

Then again, some people with celiac disease may have no symptoms.

Celiac disease is genetic, meaning it runs in families. Sometimes the disease is triggered — or becomes active for the first time — after surgery, pregnancy, childbirth, viral infection or severe emotional stress.

Marr believes her trigger came five years earlier, when she was hospitalized for herniated intestines.

“I spent a month in ICU when I was 65, and they didn’t think I was going to live. They think that may have triggered it. But I also picked up a fish toxin in the South Pacific. Got it three times. I also have colitis. I don’t have a very good digestive system. I have a real touchy system. I don’t know what triggered it, but I think [it was] probably the stress of ... the ICU visit.”

Marian Tootle’s symptoms began in early 1989. Six years earlier, the Kingsport resident and her husband divorced. The couple had six children.

“In 1989, I had been sick for five or six years and the doctor had done everything he could,” Tootle said. “He could not figure it out. I got up one morning and it was so bad I had trouble walking ... and I crawled up the stairs with my clothes, got dressed, called my daughter who is a doctor and she came over.”

An emergency room doctor told Tootle he had an idea what was wrong with her and said she needed to remove all wheat, rye, oats, barley and buckwheat from her diet. She met with a hospital dietitian to learn how to do that.

“When I got home I went to the grocery store. The things I normally bought, I looked at every label and went from there,” she said.

A subsequent endoscopy confirmed that Tootle had celiac sprue. Despite her attempts to avoid all gluten, she believes she’s still consuming small amounts. Hidden sources of gluten include additives such as modified food starch, preservatives, and stabilizers made with wheat. And because many corn and rice products are produced in factories that also manufacture wheat products, they can be contaminated with wheat gluten. Gluten is also used in some medications and cosmetics.

“I really don’t have symptoms now. I’ve gotten along fairly well to this point. I’ve retired. I don’t have trouble eating out. I can always get a piece of grilled chicken, or broiled chicken most any place and I just decline the desserts that have flour in them, and the gravy and the sauces,” she said.

Tootle has also learned that she can tolerate buckwheat.

To illustrate just how complicated celiac disease is, Browning explained that there are two known genes involved in celiac disease, and you only have to have one to develop the disease, but a third of the people with those genes are never affected. In addition, there is a 1 percent chance of developing celiac disease even when neither marker is present. And, once considered a childhood or pediatric disease, it is most commonly diagnosed in adults.

Piney Flats resident Michelle McClure started having problems about 15 years ago with milk products.

“I just dealt with it. I saw doctor after doctor, had test after test. They told me I was lactose intolerant so I just dealt with it and it just got worse. I started getting sick on other things. I couldn’t figure out what was making me sick. I got to where I couldn’t hardly get out of bed. I had body aches, my feet and legs hurt. I didn’t have any energy,” she said.

After doing research on her own, McClure decided to eliminate gluten from her diet.

“I realized I was feeling better. But there’s so many hidden sources of gluten I was still getting some,” she said.

Though she’s never been diagnosed with celiac disease, she has been diagnosed as gluten-intolerant. And she’s not interested in having to ingest gluten just to get a celiac diagnosis.

“[Testing is] expensive, and I don’t want to have to eat gluten for two weeks. I know what makes me feel better so I’m going with that,” she said. “It also causes a lot of vitamin deficiencies ... and that had created a lot of deficiencies for me, so the only tests I have now are blood tests to check my vitamin levels and that’s enough.”

She sticks with fresh foods now, though occasionally some gluten will slip though.

“Our bodies aren’t able to digest the gluten. I got ahold of some gluten a couple of weeks ago and was miserable for about three days,” she said.

According to the National Digestive Diseases Information Clearinghouse, a service of the National Institute of Diabetes and Digestive and Kidney Diseases, people with celiac disease have higher than normal levels of certain autoantibodies — proteins that react against the body’s own cells or tissues — in their blood. To diagnose celiac disease, doctors will test blood for high levels of anti-tissue transglutaminase antibodies (tTGA) or anti-endomysium antibodies (EMA). If test results are negative but celiac disease is still suspected, additional blood tests may be needed. Before being tested, the patient is to continue to eat a diet that includes foods with gluten, such as breads and pastas.

If a person stops eating foods with gluten before being tested, the results may be negative for celiac disease even if the disease is present. If blood tests and symptoms suggest celiac disease, a biopsy of the small intestine is performed to confirm the diagnosis.

“Most people, once the gluten is an issue, it will always be an issue,” Browning said. “Some can tolerate some gluten. Some can be set off by bread crumbs.”

The only treatment for celiac disease is a gluten-free diet.

That crusty, chewy pizza is a thing of the past, Browning said, but there are plenty of gluten-free products available, including gluten-free pastas and pizzas. For most people, following a gluten-free diet will stop symptoms, heal existing intestinal damage, and prevent further damage. To stay well, people with celiac disease must avoid gluten for the rest of their lives.

Gluten-free products are increasingly available from mainstream stores, as well as from special food companies.

Marr and her husband don’t eat anywhere but home — save last October when she talked ahead of time to the chef at a Johnson City restaurant.

“You can get yourself into a lot of trouble in a restaurant,” she said. “You just become a recluse as far as eating somebody else’s food unless they really know your problem.”

Finding gluten-free food when traveling has also been an issue, so the couple doesn’t travel anymore.

“You just end up taking your own food with you,” Marr said. “I did track down a company that offers freeze-dried food that is gluten-free. I ordered some, and I will order more. They don’t have a large variety of it. ... I haven’t tried much of it, but I’m going to put some away for winter and for if/when we do travel, and for if we have a flu epidemic hit or if we have an ice storm. I just can’t eat out of the pantry. My husband can eat out of the pantry, but I can’t.”

Browning facilitates the Gluten Free Gathering, a group that meets at 6 p.m., the last Tuesday of each month at Earth Fare in Johnson City. The goal of the group is to provide support and information to those who are dealing with celiac disease or gluten intolerance issues.

Another support group is hosted by Mountain States Health Alliance. The group’s next meeting is at 5:30 p.m., Oct. 21, at the Health Resources Center in The Mall at Johnson City. For more information, call 952-3700 or 1-800-888-5551, ext. 4.

Browning is considering starting a support group in Kingsport.

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Leigh Ann Laube is lead writer for the Kingsport Times-News’ Health & Wellness magazine. E-mail her at lalaube@timesnews.net