May is Celiac Disease Awareness Month

According to the National Foundation for Celiac Awareness, celiac disease is an autoimmune digestive disease that damages the villi of the small intestine and interferes with absorption of nutrients from food. This disease is triggered by the consumption of the protein gluten, which is found in wheat, barley and rye.

For Barbara Coughlin of Berlin, CT, when she first diagnosed with celiac disease, “You think to yourself, life isn’t going to be good from now on.”

“The most important thing is to look for support from other people with celiac’s,” she said.

There are over 300 symptoms of celiac disease, said Jenny Nieves of Southbridge, MA. Nieves said she suffered from extreme abdominal pains until she was diagnosed two years ago.

“I always took Ibuprofen for my symptoms. Come to find out it has gluten in it.”

Nieves’ son, Brody Blair, was diagnosed with the disease three months ago. “He was missing patches of hair,” Nieves told Patch. “His symptoms were so different from mine.”

Before Coughlin was diagnosed, she said she was “literally dying.”  It took two years for her to be properly diagnosed. Contracting a gastrointestinal disease triggered her celiac disease symptoms. “I was essentially starving to death,” she said.

Having celiac disease affects more than your immune system, experts say.

Every day routines that are easily taken for granted have to be considered when you have an allergy to something as common as gluten. Traveling, family reunions and household budget are a few things that need to be considered to avoid a slip up.

“The social aspect is tough,” Coughlin said. “When someone else is in charge of the preparation of your food, it is always dangerous.”

Her husband’s college reunion is coming up and Coughlin said she will have to bring her own food.  In past experiences, she tried making prior arrangements that always fell through.

“I would order plain fish, and the plate would come out with bread crumbs on it” or “there would be croutons on my salad,” she said.

Those with celiac disease always have to be aware of what they are eating.

 “I read more labels,” said Jackie Hughes of Stafford Springs, CT.  Hughes  did most of the research herself.

“When I was first diagnosed [more than 15 yrs ago] there was very little information on the subject,” she said.

Many people that suffer from celiac disease opt to make their own bread and bread products. Coughlin said that a bread machine costs about $300, but the process is time consuming.

“You can make it easy,” Nieves said, adding, “You eat more fruits and vegetables and rice and meat.”

Coughlin doesn’t seem to mind the food preparation part. 

“Cooking with whole foods is healthier anyway,” Coughlin said. “But you still really want baked goods, too, and they’re so expensive. Pasta, too.”

Coughlin told us that a box of gluten-free pasta runs about $3 per pound.

“There’s no cheaping out for us,” Nieves said about her grocery bills.

Although people with celiac disease have to be very careful when they dine out, “because there is always the risk of contamination” said Coughlin, more places are becoming aware of gluten allergies.

Elizabeth’s in Rocky Hill is a favorite restaurant of Coughlin’s.

“They make you this amazing Brazilian cheese bread, and 90% of their menu is gluten-free.” However, Coughlin does not advise anyone with celiac disease to eat out more than once a month because there is always a risk.

“There are so many places now that will accommodate you with your special diet. Years ago, the only thing I could basically get was a baked potato and a baked chicken breast,” said Hughes.

Grocery stores are also becoming more gluten-free buyer-friendly. Some great places to shop include Trader Joe’s, Whole Foods, Stop & Shop, Big Y, Shop Rite, Stew Leonard’s and Shaws.

The long-term risks of higher chances of lymphoma and osteoporosis help keep Coughlin on track, but she also referred to a slip-up as feeling like “a hangover on steroids.” She says that it’s never worth it to cheat because “it’s not worth taking a day off my life.”

Coughlin says there is a lot of helpful information on the Internet “on how to live well and safely, but you have to be careful of old information.”

Nieves hopes to get the word out about a disease many people have not heard of.

“Meetings are great,” she said, referring to celiac disease support groups.

If someone in your family suffers from celiac disease, you should get tested as well, because it is “very hereditary,” said Coughlin.

For more information, you can contact a support group or see a dietitian/nutritionist.

Some area restaurants and stores offering gluten-free items:

• Chili’s Bar and Grill, various locations
• Divine Treasures,  404 Middle Turnpike West, Manchester, CT
• Nature’s Grocer, 81 East Street, Vernon, CT
• 99 Restaurants, various locations
• Bertucci’s Italian Restaurant, various locations
• Boston Market, various locations
• Burton’s Grill, 100 Evergreen Way South Windsor, CT
• Carrabba’s Italian Grill,  31 Red Stone Road, Manchester, CT