Sunday March 3, 2013

PITTSFIELD

Five years ago, after undergoing abdominal surgery, Beth Maturevich began feeling ill.

"Chronic pain, fatigue, blistery rashes on my skin, digestive issues, and I felt foggy. A feeling of going through life in slow motion," said Maturevich, a 37-year-old Pittsfield resident. "The world was going on around me, and I couldn't focus enough to
keep up."

The feeling was frustrating, mysterious, scary.

Maturevich said she was "a lab rat" for doctors who tested her for an array of illnesses, from fatigue disorders and migraines to temporal lobe seizures.

There were a lot of diagnoses. A lot of theories. But none were correct. Her symptoms continued.

Until Dr. Oz came along.

A gluten-free label is shown on a box of crackers at Guido’s Fresh Marketplace in Pittsfield. Most grocery stores now have gluten-free sections.
A gluten-free label is shown on a box of crackers at Guido’s Fresh Marketplace in Pittsfield. Most grocery stores now have gluten-free sections. (Ben Garver / Berkshire Eagle Staff)

Dr. Oz is Mehmet Oz, a cardiac surgeon who hosts a syndicated TV talk show that focuses on health issues.

Eighteen months ago, Maturevich was watching his show about gluten sensitivity, which affects nearly 21 million Americans.

"There was a woman on the show, and she had all my symptoms," Maturevich said.

The woman had celiac disease, an autoimmune disorder of the small intestine that is worsened by the ingestion of gluten, a protein found in wheat, barley and rye.

Filled with curiosity after seeing the Dr. Oz Show, Maturevich bought books about celiac disease. She scheduled a test for it.

It came back positive.

She now does her best to avoid gluten, and in an effort to help others, she started a Facebook page, "Gluten Free Gal," about a month ago. The page, which has more than 100 fans, gives gluten-free recipes, plus tips and information for people who are sensitive to the protein.

Gluten sensitivity can produce violent symptoms -- nausea, vomiting, headaches, skin rashes, dizziness and disorientation -- that last for hours, according to the Celiac Disease Foundation. The disease can increase the risk of liver disease, thyroid disease, lupus, alopecia and chronic fatigue syndrome.

According to the foundation, the disease is inherited, and its onset can be triggered in adults by a medical episode such as surgery or pregnancy.

Because there are no drugs to treat celiac disease, the best way to control it is to avoid gluten. But that's not easy. The substance is in virtually everything, including bread, cake, salad dressing, beer, cookies, rice, licorice, and even some lip balms, shampoos, food coloring and lipsticks.

"My advice to people is to simplify," said Erika Tilley, a licensed dietitian and nutritionist who works for the Community Health Program in Great Barrington. "Eat potatoes, brown rice, meat, fresh vegetables. Cook your own food."

Tilley said there are numerous websites about gluten-free eating, and many, such as www.celiac.com, are useful. But, she said, people with the disease need to learn to read the labels on food to see if the product contains an ingredient known to have gluten in it.

"You always have to be aware," Tilley said. "Read the labels on everything, because gluten can be in anything."

Tilley said that for people who don't have time to prepare gluten-free meals, most grocery stores have gluten-free sections.

"It's a lot easier than it was, say, 10 years ago," Tilley said. "Just about anything you can think of can be gluten-free now. Whether it tastes good is another story. The taste is kind of flat. But there are companies out there, like Glutino or Udi's, that make food that's pretty tasty now.

A TV show hosted by Dr. Oz, above, spurred Maturevich to learn more about celiac disease.
A TV show hosted by Dr. Oz, above, spurred Maturevich to learn more about celiac disease. (Photo courtesy of World Economic Forum)
"

The demand for gluten-free food is up.

According to the National Foundation for Celiac Awareness, the number of gluten-free menu items increased 61 percent between 2010 and 2011. And according to U.S. News & World Report in 2009, 15 to 25 percent of U.S. consumers reported looking for gluten-free products.

Maturevich said she started her "Gluten Free Gal" page after getting Facebook messages "all the time from people asking for help."

Maturevich has posted such items as the menu from her Super Bowl party last month. (The fare included pulled pork and corn chowder.) One fan of the page asked for suggestions of "local restaurants that have a selection of GF meals."

Maturevich said she's even thinking about forming a support group that would meet periodically. 

Another local woman with celiac disease, Jennifer Germaine of Stockbridge, recalls ruefully eating a purported gluten-free pizza at a restaurant in the county, "and getting sick for a couple of hours afterward."

"[Needing to avoid gluten] changes your life," said Germaine, a wife and mother of three. "I have my own toaster, my own microwave -- even my own refrigerator."

Germaine said she cooks one meal for her family and another for herself. She segregates her diet because even the smallest particle of gluten in her system can trigger violent illness.

Maturevich said life is a little easier now that she knows more about celiac disease. She has more energy to be a mother to her two teenage daughters. She has more verve to sing in Whiskey City, a local country band.

And she wants to help others.

"The page is just the beginning, I hope," Maturevich said. "I get so many [Facebook] messages of hopelessness. My story gives them hope."

To reach Derek Gentile:
Dgentile@berkshireeagle.com,
or (413) 496-6251.
On Twitter: @DerekGentile

Gluten/celiac facts

n 10 percent of Type I diabetics have celiac disease, an intestinal condition worsened by the ingestion of gluten, a protein found in wheat and other grains.

n Gluten sensitivity affects nearly 21 million Americans, according to the National Foundation for Celiac Awareness.

n Abdominal pain, bloating and diarrhea can occur in gluten-sensitive people. Other symptoms may be anemia, depression, joint pain, muscle cramps, rashes, tingling appendages, osteoporosis or fatigue. Some people, meanwhile, show no symptoms of gluten sensitivity.

n Because the symptoms mimic other disorders, diagnosis of celiac disease can be difficult.

n Methods of testing for the disease include a blood screening and an intestinal biopsy.

n There is no cure for the disease; avoiding gluten is the only way to relieve the symptoms.

Additional sources: American Diabetes Association, Mayoclinic.com, the American Medical Association.