By Lola O’Rourke, MS, RD
Celiac Disease (CD) is the result of an immune system response to the ingestion of gluten, a protein found in wheat, rye and barley. When people with CD ingest gluten, this auto-immune response causes damage to the small intestine, reducing the body’s ability to absorb nutrients, leading to many of the most common symptoms of CD. If left untreated, CD can have serious long term health consequences.
The symptoms of CD are extremely varied, and mirror symptoms for other conditions too. This is, in part, why it often takes a long time for CD to be diagnosed – the average length of time it takes for a diagnosis is about four years. To complicate matters, many people with CD do not have obvious symptoms at all – they may have anemia or low bone density, conditions which may present during a routine medical exam. Some of the most common symptoms include diarrhea, constipation, bloating, weight loss, anemia, chronic fatigue, infertility, migraines, bone pain and muscle cramps.
It’s estimated that about 1 percent of the U.S. population has Celiac Disease; the vast majority of these cases are undiagnosed. To develop CD, it’s necessary to have a genetic predisposition, to be consuming gluten and to have the disease activated by a triggering event such as surgery, illness, or even stress.
The first step to diagnosing CD is a blood test ordered by your physician which will look for the presence of antibodies that are indicative of CD. If these tests suggest CD, a biopsy of the small intestine is recommended to determine if the intestinal cells show damage consistent with this condition. The biopsy is considered the “gold standard” for a CD diagnosis. If the biopsy does indicate CD, a gluten-free diet is warranted. Part two of the “gold standard” CD diagnosis is if the patient experiences improvement on a gluten-free diet.
People who experience adverse reactions to gluten but test negative for celiac disease may have a condition called non-celiac gluten sensitivity (NCGS). Symptoms tend to overlap with those of CD, however, in the case of NCGS an intestinal biopsy would be negative. Treatment for NCGS is also a gluten-free diet. The recognition and classification of NCGS is quite new and more research is needed, but estimates claim the incidence of NCGS is up to 6 or 7 times higher than that of CD.
The “good” news about CD (and NCGS) compared with many other medical conditions is that it can be treated by diet. (Note: In some cases, especially the newly diagnosed, nutritional supplements and/or other medications may be required to treat related conditions: consult with your primary care physician and dietitian.) What’s sometimes viewed as “bad” news (often for the newly diagnosed) is that it MUST be treated by diet. The only known treatment is a strict gluten-free diet. Although a gluten-free diet may seem restrictive at first, you can still enjoy a wide range of delicious foods, and in time, it will seem second nature.
There is a wealth of good information available to help people live a healthy and satisfying gluten-free life. The Gluten Intolerance Group (GIG) is a non-profit organization that provides an extensive range of educational information on numerous aspects of celiac disease and other gluten-related disorders, including how to eat safely in restaurants, what to do about gluten in medications, and how to use gluten-free grains. Visit www.gluten.net for information, recipes and listings of certified gluten-free products. GIG also has a network of support groups around the country. Getting involved with a support group can be very helpful in terms of learning about local gluten-free resources (grocery stores, products, restaurants), as well as for sharing stories and getting support, especially during the early stages of learning about the gluten-free diet.
A local GIG Branch meets at Valley Medical Center the third Tuesday of every month from 7:00 to 9:00pm. For more information contact Lynn Jameson: Southseattlegfgroup@yahoo.com.
About Lola O’Rourke, MS, RD
Lola O’Rourke is the Director of Consumer Education for The Gluten Intolerance Group. A registered dietitian who specializes in gluten-free eating, weight management and family meal planning, Lola has spent the past twenty-five years providing nutrition expertise to public health agencies, food businesses, school districts and individuals. Lola is bilingual in Spanish and has lived and worked in Mexico and Latin America. She recently served as a national media spokesperson for the American Dietetic Association and conducted over 300 interviews with venues including The New York Times, MSNBC, USA Today and Latina magazine. She’s been an avid baker and dessert fan since her teens, became gluten-free as an adult and now integrates these interests into healthful and delicious eating plans for her clients.