As a child, Mary Neville was often ill. She was small, didn't grow well and was frail. But it wasn't until after the birth of her third child that she became critically ill and went on the long odyssey, which ended in the discovery that she suffered from celiac disease.
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Dietitian Molly Cloherty, left, offered a cooking demonstration at McGinnis Sisters for those living with celiac, a disease that affects how the body reacts to gluten. (Theresa Glenn, Post-Gazette)
More information about celiac
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Now 57, Neville is the president of the Greater Pittsburgh Celiac Sprue Group. "I suffered for 30 years without support or really knowing what it was," said Neville; "I don't want that to happen to others."
Celiac is a genetic autoimmune disorder that causes the person affected to react to gluten. The consumption of gluten creates an unwanted reaction when the immune system attacks the small intestine, eventually destroying the villi. In turn, the small intestine can no long absorb nutrients and vitamins from food.
The outcome can include malnutrition, osteoporosis, infertility and neurological conditions or, as in Neville's case, a failure to thrive.
Unfortunately, her story is typical of those who have celiac disease. According to statistics shared by Dr. Anthony Colatrella of Pittsburgh Gastroenterology Associates, a study published in the American College of Gastroenterology Journal noted that the average time to diagnose celiac disease is 11 years.
"The study also shows that the patients have to consult five different physicians for the diagnosis," Colatrella said. "It is a much underappreciated and, therefore, underdiagnosed disease."
Despite most people being unaware of the disease, studies show that it may be quite prevalent. Colatrella said. He said a study just published in by Dr. Allessio Fassano estimates the average risk for developing celiac disease at 1 in 133 persons.
Neville has seen a huge increase in the members of the Greater Pittsburgh Celiac Sprue Group. "We started the organization in 1991 in a church in Crafton and had about 30 people attend. Now there are 600 people registered with us."
There are several symptoms of celiac. "The so-called common symptoms are diarrhea, a general gassiness, weight loss," said Colatrella. "But there are also symptoms that are more atypical, such as constipation and abdominal pain."
Other symptoms include health issues caused by vitamin deficiencies, such as osteoporosis, malnutrition, chronic fatigue and skin problems.
"There are a whole host of other symptoms caused from the failure of the intestine to absorb the nutrients from food that may even include neurological symptoms," said Colatrella. "Unfortunately, the symptoms vary in everyone, which makes it harder to diagnose."
Celiac is genetic, so those affected must have the gene, but they will also have other factors, according to Colatrella. "They must, of course, have the gene, but they must have problems with the ingestion of protein, and also there must be an enzyme present throughout the body."
A person with celiac may go for years without being affected, while others, such as Neville, will begin to suffer as a child. "Why it begins in one person at 2 or 3 or another at 33, or even another at 83, isn't always clear," said Colatrella. "We have seen that stress, such as infection, pregnancy or surgery, may have some effect."
Because much of the diet in the United States contains gluten, it can be difficult for those affected to avoid it. Molly Cloherty is a local dietitian who recently finished her internship studying celiac. "My twin sister is Mary Neville's daughter-in-law. Due to my interest in food, when my sister was telling me about this, I had to know more," she said.
Cloherty teaches classes at McGinnis Sisters specialty grocery store in Monroeville and, along with Neville, works with Karen Novak from McGinnis to find foods that are gluten-free for the store.
The dietitian also develops recipes and assists people in creating a gluten-free kitchen. "I try to take a recipe and manipulate it so that they can make it and eat it," said Cloherty. "Right now I am working on biscotti."
For now, there are no cures or medicine for those who suffer from celiac. "It can only be treated by diet," said Cloherty.
In addition to McGinnis Sisters, which has many gluten-free products, several mail order companies specialize in the products.
"They must read the labels," said Neville. "Plus, there are more and more products that are being developed for us."
"In fact," she joked, "some are so good that I am even developing a tummy."
"MY BIG FAT GREEK GLUTEN-FREE PASTA SALAD"
- 1 pound gluten-free pasta, cooked, drained and cooled
- 6 plum tomatoes, seeded and quartered
- 1/2 cup black olives or Greek Kalamata olives
- 12 ounces feta cheese, crumbled or diced
- 13.75-ounce can artichoke hearts
- 8.75-ounce jar roasted red peppers or 1 fresh red
pepper
- 1 medium red onion, diced
- 3/4 cup Greek Salad Dressing (gluten free approved -- we used Annie's Natural)
- Juice from 1 lemon
- 1 tablespoon fresh oregano or 1 teaspoon of dried oregano
- Salt and pepper to taste
Toss all ingredients together in a large bowl. Allow to sit in refrigerator for 1 hour before serving for flavors to blend together. You can also toss grilled chicken or shrimp into salad to make this dish a complete meal. Serves 6.
Molly Cloherty
BROWNIE PIE
- 1/4 cup margarine or butter, melted
- 2/3 cup brown sugar
- 1/2 cup liquid egg substitute
- 1/4 cup buttermilk
- 1/4 cup gluten-free flour mix
- 1/3 cup cocoa powder
- 1 teaspoon gluten-free vanilla
- 1/4 teaspoon salt
Heat oven to 400 degrees. Spray an 8-inch pie pan with cooking spray. Melt margarine or butter. Pour into medium mixing bowl and stir in sugar. Add the remaining ingredients and stir until well blended. Pour into the prepared pan and bake for 15 minutes. Decrease oven temperature to 350 degrees and bake 5 minutes or more or until set. Cool slightly before serving. Top with your favorite ice cream, frozen yogurt or dairy-free topping as desired. Makes 8 servings.
Molly Cloherty
Kathleen Ganster is a Hampton-based freelance writer.
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