Celiac awareness rising, but disease still a gut punch
Meghann Mikluscak has been living with celiac disease for nearly two decades.
Michelle Campion
Nearly two decades have passed since Meghann Mikluscak was diagnosed with celiac disease. She remembers it well.
“It was August 2003,” said Mikluscak, a Canonsburg resident formerly from Uniontown.
Back then, she experienced some of the digestive symptoms that are commonly associated with celiac, but not consistently. “Would my stomach get upset? Yes and no. Sometimes I would eat some gluten and it wouldn’t bother me.”
A generation has passed since Mikluscak switched to a diet free of gluten, a protein found in wheat, barley and rye that can affect the physical well-being of those afflicted.
The transition hasn’t always been easy, for she had to forsake foods she liked. During the early years especially – when diagnoses of celiac were becoming more prevalent – many of the gluten-free options weren’t satisfying to the palate.
“It was definitely a complete change,” Mikluscak said. “Back then, there were not the options there are now. I found myself avoiding gluten because the substitutes were not great. Today, it’s an easy choice: try something else.”
And today, she feels better and is healthier.
Mikluscak is not facing this quandary alone, to be sure. An estimated 1% of the global population has celiac disease, according to celiac.org. That amounts to 79 million people.
It is a hereditary condition that can develop at any age. The website defines it as “a serious autoimmune disease that occurs in genetically predisposed people where the ingestion of gluten leads to damage in the small intestine.” The online site adds that 2.5 million Americans “are undiagnosed and are at risk for long-term health complications.”
Those complications can be profound, according to Michelle Campion, dietitian for Washington Health System.
“Some think it’s a fad diet, but for those with celiac, if you don’t follow a gluten-free diet, you will have problems,” said Campion, who works out of the Wilfred R. Cameron Wellness Center in South Strabane Township.
She explained that gluten will “break down” villis – tiny, hair-like projections in the small intestine that absorb vitamins, minerals and other nutrients from food. “You can become severely malnourished.”
Celiac.org says “all people” with the disease “are at risk for long-term complications, whether or not they display any symptoms.” “There are more than 200 known celiac disease symptoms,” the website added, yet some individuals “have no symptoms at all, but still test positive on the celiac disease blood test.”
Mikluscak said her symptoms following inadvertent gluten consumption have changed over time. “I now have joint and back pain and my hands will swell, as opposed to my stomach getting upset.”
Campion said her focus, as a dietitian, is “not so much on what clients should not eat, but what they can eat. What can you eat that you like that will benefit your body with this condition?”
Avoidance is a challenge, for gluten shows up in some unconventional places. “It is in medication or vitamins or soy sauce,” Campion said. “Some cosmetics for women have gluten. So does Play Doh for kids.”
Processed foods, she believes, are not beneficial. “We hear that a lot of people feel better because processed foods are out of their diet.”
Eating out is a major concern among gluten-free consumers. There is greater risk of cross contamination at a restaurant, where items with and without gluten may be prepared in the same fryer, toaster or grill top and handled with the same utensils.
And while more restaurateurs and staff are aware of the need to provide gluten-free options, some specialize in cuisine that is not gluten-friendly. Others, quite simply, are not well versed on this still-emerging issue.
“A well-intentioned person may make something say gluten-free, but you can’t go by that. There could be a dish without crumbs, but it may have soy in it,” said Sandi Kern, who runs a virtual health and lifestyle coaching practice.
Kern, also an author from East Washington, recently published her first book, “Desire to be Well: Recipes and Wellness for Health and Happiness.” She expressed concerns about restaurants during an interview with the Observer-Reporter.
“Certain restaurants do have food sensitivity and allergy training, which is a huge step. But there are still flaws.
“We call and talk to a kitchen manager or chef and list needs, and put together a recipe from what they have. The server is made aware and everything is handled in a stress-free situation. I feel confident the food is not being contaminated. But can you expect a college kid to do it correctly?
“More restaurants are using a gluten-free bun, but still not preparing food in a separate pan. That takes more prep, but it beats the alternative – getting sick.”
Michael Passalacqua, owner of Angelo’s Restaurant in North Franklin Township, said his facility strives to serve gluten-free entrees and items – and does.
“The only thing we won’t do is gluten-free pasta,” he said. “It’s a logistical issue. We get so busy, we can’t have a pot on the stove to make it.
“We can make any sauteed items without flour. Veal and chicken piccata. We can make customized anything gluten-free, plus steaks, salmon and mashed potatoes.”
Passalacqua said Angelo’s has adapted to serving “all dietary things over the last 10 years – including vegan, vegetarian and gluten. The staff now knows how to do it. Five years ago, no.”
The restaurant’s gluten-free offerings, he said, also include most of its signature gelato flavors. “We have to watch a couple of them – Cookies and Cream and Death by Chocolate. But the general flavors are gluten-free.”