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Living Well with Celiac Disease
BIDMC Doctors, Dietitians Offer Expert Advice
A warm bread roll with dinner. Sounds delicious doesn’t it? But for the one out of 100 people in the United States who are living with celiac disease, bread is a forbidden food.
Celiac disease is an autoimmune condition that damages the lining of the small intestine, preventing it from absorbing certain nutrients from food. Simply eating a piece of bread can make the body react, creating severe abdominal pain and diarrhea or constipation for a person with celiac disease. Some patients even complain of skin rashes, irritability, and fatigue.
“The solution looks so simple on paper, but in real life it’s a whole different story,” says Dr. Daniel Leffler, Director of Clinical Research in the Celiac Center at Beth Israel Deaconess Medical Center, the only multidisciplinary center in New England that specializes in the care of patients with celiac disease and gluten-related disorders. “The solution is to stop eating gluten.”
But gluten — a protein found in wheat, barley, and rye — is everywhere. It is found in bread, pasta, cookies, pastries, cereal, and many other foods that are made with wheat, barley, or rye. Even hot dogs, dressings, and soups may contain gluten. Needless to say, grocery shopping can be incredibly difficult for a person with celiac disease.
To make matters worse, many patients don’t receive guidance.
“Most patients are given a diagnosis via a letter, and that’s the last thing they hear from their doctor,” says Dr. Leffler (right).
Dr. Leffler adds that many doctors and dietitians have not received proper training related to celiac disease or how to help patients adjust their diets. And, there are only a handful of celiac centers throughout the country.
A BIDMC Resource for Celiac
Recently, BIDMC launched CeliacNow (CeliacNow.org), a website dedicated to helping people living with celiac disease.
“We often hear that patients have struggled to get diagnosed or counseled properly on the diet,” says Melinda Dennis, MS, RD, LDN, the Celiac Center's Nutrition Coordinator.
Dennis, a nationally recognized expert in celiac nutrition, co-authored Real Life with Celiac Disease with Dr. Leffler. Together they developed the CeliacNow website with Ciarán Kelly, MD, a gastroenterologist and Medical Director of the Celiac Center.
“CeliacNow was written to be a tool for patients and providers who need to get know all the details about a gluten-free diet,” explains Dennis (right). “For example, the caveats of the food labeling law, which are critical for a patient on the gluten-free diet to understand, but easy to overlook or misinterpret.”
Whether one is recently diagnosed or has been living with celiac for some time, CeliacNow can be a great guide. One section helps patients learn the ins and outs of the gluten-free diet — even how to enjoy dining out. It also teaches patients how to read labels while grocery shopping, and provides tips on how to save money on a gluten-free grocery bill.
This year, CeliacNow plans to expand their site with a section that will highlight the research being done to find new treatments for celiac disease.
“These include a vaccine for celiac disease, agents that prevent the influx of gluten into the digestive tract, enzyme cocktails that degrade gluten before it reaches the small intestine, and various therapies,” explains Rupa Mukherjee, MD, a gastroenterologist in BIDMC’s Celiac Center.
CeliacNow also offers an assortment of resources to people who have gluten sensitivity but don’t have celiac disease. Non-celiac gluten sensitivity is a condition with symptoms similar to those seen with celiac disease (including gas, bloating, abdominal pain, diarrhea and constipation), but there is no damage done to the small intestine.
Learn more: Non-celiac gluten sensitivity »
Today, people living with celiac disease or those with non-celiac gluten sensitivity don’t have to forgo their favorite food. Gluten-free bread, cereal, chips and protein shakes, among other foods, are widely available. Even gluten-free beer and gum can be found on store shelves.
But, as the Celiac Center clinicians advise, anyone who suspects they have celiac disease or gluten sensitivity should not start following a gluten-free diet until they have seen a gastroenterologist and have been tested for celiac disease.
Above content provided by Beth Israel Deaconess Medical Center. For advice about your medical care, consult your doctor.
Posted March 2013