Getting to know Celiac Disease. Widely under-recognized but not a rare disease, celiac affects 3 out of every 100 people in the U.S. This autoimmune disease can be diagnosed at any age. It is genetically transmitted — a person inherits the risk of celiac disease from one or both parents. Those with a family member who has celiac are at an increased risk of developing the disease.
THE CATALYST: GLUTEN
Celiac disease is triggered by ingesting gluten — a protein found in wheat, barley, rye and prepared foods. In the small intestine, gluten produces an inflammatory response that activates the body’s white cells. These white cells damage the lining of the small intestine and intestinal villi, which are responsible for enabling the small intestine to absorb nutrients from food. Poor absorption of important nutrients may lead to a variety of illnesses and symptoms.
According to a 2004 National Institutes of Health statement, celiac disease may be classified as classic, atypical, silent or latent. Symptoms of classic celiac disease include diarrhea, abdominal pain, bloating, constipation, poor appetite, weight loss or reflux. The atypical presentation may include just mild reflux or bloating, and there may be a failure to absorb calcium or iron, which can lead to anemia or osteoporosis. Also, there may be other unusual symptoms such as dental enamel defects, nerve damage or disease, irritability, skin rash or fatigue. These symptoms may be associated with other illnesses or misdiagnoses, such as irritable bowel syndrome.
Silent celiac disease is usually diagnosed during a colonoscopy or screening for celiac. Latent celiac occurs when a person has a positive blood test but a normal intestinal biopsy.
TESTING FOR CELIAC
Certain high-risk groups should be tested for celiac disease, including those with a family member who has it, and individuals who have type 1 diabetes.
Diagnosing celiac disease is done through a blood test to screen for specific autoantibodies. The blood tests are IgA-anti-tTG and Anti-EMA-IgA. If the results are positive, then the gold standard of diagnosing celiac disease is by an endoscopy of the small intestine. During this test, a gastroenterologist visually examines the small intestine via a small camera at the end of the probe. If celiac disease is present, the finger-like villi are flat and cannot absorb nutrients.
Until all of the celiac screening is done, a person should not follow a gluten-free diet, as it will interfere with test results.
Once the diagnosis is confirmed, a child with celiac disease should be on a strict gluten-free diet, which is the only treatment for this disease so far.
There are current studies exploring enzymes, alternative grains and immunotherapy, but such research is in the early stages of development.
To help you adjust to a gluten-free diet, meeting with your health care provider and dietitian may be helpful. You will need to learn which foods are safe, how to read food and medication labels and how to locate gluten-free foods in the grocery store. If your child has celiac disease, you must inform his teacher or childcare provider of any dietary restrictions. It’s important to educate anyone involved with your child about which foods are safe, but also what to do if he becomes ill. You also need to inform supervising adults at social events, camp and any other away-from-home activities about dietary restrictions.
You and your newly diagnosed child should also learn about the disease, and receive help with selecting gluten-free meals, cooking gluten-free and telling others about dietary restrictions. Psychological intervention may be necessary to help you and your child cope with dramatic lifestyle changes.
In general, kids with celiac disease must avoid foods that contain wheat, rye and barley (including spelt, triticale and kamut). They can eat a well-balanced diet with a variety of foods, including gluten-free bread and pasta. For example, instead of wheat flour, you can use potato, rice, soy or bean flour. Also, you may use naturally gluten-free grains such as buckwheat, quinoa and millet, but check the product labels to be sure they are gluten-free. Plain meat, fish, rice, eggs, fruits and vegetables don’t contain gluten, so your child can eat as much of these foods as she likes. Dairy is not restricted, but there may be transient lactose intolerance when beginning a gluten-free diet. All kids, including those with celiac disease, should receive the recommended childhood vaccinations.
Children with celiac disease do not have any restrictions on their activities. Educating, supporting and encouraging them to do anything they want to in life despite having this disease will help them reach for the stars.
Jo Ann Serota, DNP, CPNP, FAANP, is a certified PNP and co-owner of Ambler Pediatrics, Blue Bell, PA. She is a Past President of NAPNAP and President of the NAPNAP Foundation.