Lynn Denton sometimes misses eating biscuits.
“That gets to be the hardest thing,” the Scottsville woman said.
Denton knows that taking a nibble on a piece of bread could make her very sick. She suffers from celiac disease, an autoimmune disorder in which the body reacts to the protein gluten, which can be found in wheat, bran, rye and some oats.
“Gluten is in pretty much everything,” said Dr. James Curtiss, a gastroenterologist at Physicians Specialty Center at Greenview Regional Hospital. “One in 200 people are susceptible to it.”
It used to be that celiac disease would be diagnosed in pediatric situations in which an infant or child would have diarrhea, failure to thrive or dehydration, Curtiss said. Now more and more adults are being diagnosed with it.
“It’s mostly because people are aware of it, and there is better testing,” he said.
Celiac disease – which happens more often in people of northern European ancestry or who have a genetic predisposition for it – is more than just diarrhea, constipation and abdominal cramping, Curtiss said. Some other symptoms are joint pain, fatigue, certain rashes, low iron or anemia, low vitamin D, low calcium and mood irritability. Celiac disease can be associated with other autoimmune illnesses such as Type 1 diabetes and thyroid disease as well as Down syndrome and fertility issues.
“There are a number of things that you look at,” he said. “Not everybody has symptoms.”
Patients also have a small risk of intestinal malignancy, Curtiss said.
“Celiac can be fatal, but thankfully it’s not very often,” he said.
Denton said she had several symptoms when she was diagnosed about five years ago.
“I was having trouble with my stomach. I had chronic diarrhea and breaking out on my arms, knees and around my waist,” she said. “I went to other doctors about that, and they didn’t know what it was.”
The disease may be genetic in Denton’s case, she said.
“My mother died of colon cancer when I was 4 years old,” she said. “It could’ve been because of celiac disease. They didn’t test for stuff like this back then.”
There are some blood tests that can detect celiac disease. Curtiss also does a biopsy of the small intestine, a 10-minute procedure in which the patient is sedated. Once celiac disease is diagnosed, Curtiss talks to the patient about treatment, which can include a gluten-free diet or, for those whose disease doesn’t respond to dietary changes, steroids.
“Treatment is kind of tough. Ninety percent of people respond to dietary changes,” he said. “Some can make minor changes and receive benefit.”
Patients with celiac disease often need a dietitian to help them adjust to a new way of eating and get the nutrients that the small intestine cannot absorb as well. Linda Howsen, community dietitian at The Medical Center, said patients should read food and beverage labels as well as things that may come in contact with the mouth such as lipstick, medicine and toothpaste. They also should be careful about sharing utensils, such as a bread knife, that may have come in contact with a gluten product.
“It’s a cross contamination issue,” she said.
Because more stores carry gluten-free products, patients with celiac disease can have a lot more freedom than they used to, Howsen said.
“The big concern in some of the gluten-free products is the low level of nutrients, but some gluten-free products are fortified,” she said. “If they are not, you can take a multivitamin or buy enriched gluten-free products.”
Gluten-free products aren’t necessarily like those with gluten, though, Howsen said.
“They may have a different taste and texture,” she said. “You may have to do some manipulation to make it taste and have the texture the way you want it.”
Denton said she has changed her way of eating and takes extra vitamins, including calcium, vitamin D and vitamin B12 shots. She has increased her intake of fruits and vegetables.
“I try to eat foods that are gluten free,” she said. “I can tell when I eat something I’m not supposed to.”
She encourages others who have celiac disease to do research so they know what they’re facing.
“I purchased books,” Denton said. “You really need to watch what you eat. It could lead to more serious complications.”
The following websites have information about celiac disease:
The National Center for Biotechnology Information
www.ncbi.nlm.nih.gov
Celiac Disease Foundation
www.celiac.org
Celiac.com
www.celiac.com
The Gluten Intolerance Group of North America
www.gluten.net
Celiac Sprue Association
www.csaceliacs.org
American Dietetic Association
www.eatright.org
