To the editor:
Celiac disease (CD), also referred to as gluten sensitive enteropathy (GSE), gluten intolerance or celiac sprue, is considered to be the most under-diagnosed disease today, potentially affecting one in every 133 people in the U.S. It is a chronic, inherited disease and, if untreated, can ultimately lead to malnutrition.
Gluten intolerance is the result of an immune-related response to the ingestion of gluten (found in wheat, rye, barley and malt). It damages the small intestine. Nutrients are then quickly passed through the small intestine rather than being absorbed. To develop celiac disease, three things must be present: (1) You must inherit the gene, (2) consume gluten and (3) have the gene triggered. Common triggers may include stress and trauma (surgeries, pregnancy or viral infections). Approximately one in 200 first-degree relatives could have CD triggered in their lifetime. The disease is permanent, and damage to the small intestine will occur every time you consume gluten, regardless if symptoms are present.
Most physicians recognize the classic symptoms of celiac disease: diarrhea, bloating, weight loss, anemia, chronic fatigue, weakness, bone pain and muscle cramps. Physicians may not be aware that celiac disease frequently presents with other symptoms. Some do not involve the small intestine. Often symptoms can include constipation, alternating with diarrhea, or premature osteoporosis. Children may exhibit difficulty learning or behavioral problems and lack of growth.
Patients are often incorrectly diagnosed with Crohn's disease, or spastic colon/bowel.
Initial screening for CD is a blood test taken by your physician. The test can be referred to as a celiac sprue test. Treatment is exclusively avoidance of all gluten foods. A gluten-free diet for life is the only treatment currently available, although studies are under way to try to find other treatments.
Questions to ask your doctor include:
a. Should I take nutritional supplements?
b. Where can I get a bone density test?
c. How can I find out about the diet?
Information is available on the Internet, and there may be a gluten-free group in your area, or you could start one. It helps if a group of CD patients get together to swap recipes and hints on how to live a gluten-free life.
Sybil Jayne Bath