When Julie Callender’s patients are diagnosed with celiac disease, she counsels them on managing a gluten-free lifestyle. It’s a topic the nurse practitioner at Lancaster Gastroenterology (www.lancastergi.com) knows well.
“My journey officially started about six years ago, when one of our partners did an endoscopy to diagnose anemia,” Callender says. “We discovered that I had celiac disease.”
All her life, Callender knew she was anemic, but her case was written off as a typical female condition. With her mild symptoms of bloating and gas issues, she just “learned to live with it.” Now gluten-free, her symptoms are gone, and so is her anemia.
Callender’s story is like many others: the annoying but overlooked symptoms, the diagnosis of an increasingly recognized condition, the changes that made all the difference. “Gluten-free” is not a dietary catchphrase, medical professionals insist. Celiac disease is a diagnosable condition requiring lifestyle changes to avert serious complications.
What is celiac disease?
In celiac disease, a protein called gluten triggers antibodies to attack the intestinal lining. That attack damages or destroys tiny hair-like projections called villi in the small bowel, restricting their nutrient-absorption abilities. Fats, proteins, vitamins and minerals aren’t absorbed but pass through the body, resulting in malnutrition over time.
“Celiac disease is an abnormal reaction of the body to the protein called gluten,” says Dr. Rohit Jindal of Gastroenterology Associates of York (www.gastroyork.com). “Gluten is a protein commonly found in wheat, barley and rye.”
As many as one person in 100 could have celiac disease, and the condition often runs in families. Symptoms can appear in childhood, later in life or never.
Early diagnosis is essential to preventing the serious consequences of celiac disease: the stunted growth in children and the malnutrition, infertility, osteoporosis and even small bowel lymphoma in adults.
“It is not a condition that should be ignored,” says Jindal.
How is celiac disease diagnosed?
Like other gastrointestinal conditions, such as Crohn’s disease and irritable bowel syndrome, celiac disease symptoms rarely follow a textbook pattern. Patients can have bloating, diarrhea, excessive gas, lactose intolerance, anemia, joint pain or fatigue.
But unlike its gastro cousins, celiac disease is often easily diagnosed, says Dr. Justin Harberson of Lancaster Gastroenterology. The first step is a blood test seeking an antibody to gluten. If the test is positive, an endoscopy in the upper intestine confirms the disease and its extent.
“When I see a patient and celiac is in the conversation, we need to consider this first, because we live in a world of common things, less-common things and rare things, and celiac is one of the top diagnoses we like to establish right off the bat,” Harberson says. “The patient either has it, or they don’t.”
Whatever you do, don’t self-diagnose and eliminate gluten on your own, say medical professionals. To avoid abnormal or unreliable results, stick to your normal diet and then get the tests.
What changes should celiac disease patients make?
Conquering celiac disease demands “a big lifestyle change for most people, but we are living in an age where gluten sensitivity is more and more recognized, and there are more and more food options available,” says Jindal. Through management and nutritional therapy, damage can be limited and nutritional deficiencies cured, although bone loss might be impossible to reverse.
Like Callender, who still fit in her wedding dress after 27 years of marriage, celiac disease patients might be shocked at the weight gain associated with controlling their disease, because their bodies are suddenly absorbing fats and nutrients. “I wanted to have my cake and eat it, too,” Callender jokes with patients.
But Callender also warns about the long-term effects of noncompliance. These tips can help celiac disease patients manage their conditions:
• Living gluten-free means eliminating all gluten, because the tiniest specks can cause reactions. Watch for it in hidden places: ice cream, pill capsules, lipsticks, restaurant-grade soy sauce, even knives that have touched bread. “It’s not just a matter of picking croutons off the salad,” says Callender.
• Join a celiac support group.
• Ask your doctor to prescribe brand-name prescriptions, because some generic capsules
contain wheat.
• In the grocery store, shop for naturally gluten-free fresh foods instead of specialty gluten-free items. Callender’s family members eat their regular pasta, while she eats foods that didn’t have to be stripped of gluten in the first place.
• When dining at a friend’s house, hosts usually prefer to hear “what you can eat than what you can’t, so they can prepare a meal that you can eat, and they don’t feel they’ve cheated you out,” says Callender. Remind them you can eat meat, potatoes, fruit, vegetables and rice, but nothing prepared with flours.
• Bring gluten-free dishes to parties. At family gatherings, share that responsibility with relatives who also have celiac disease.
Patients must become “a master of their disease,” and family and friends will learn to understand that celiac disease is “a really, truly debilitating condition,” says Harberson. “People who have celiac become very careful about what they eat, what they bring to eat, how they snack, where they eat it. Colleagues and friends become very attuned and sensitive to that, and they actually will accommodate. We live in a society where there are so many gluten-free options.”
