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Posted 08/04/05
Hidden Epidemic: Millions Have It But Don’t Know It
Disease Strikes 3 Million in U.S., More Than Alzheimer’s or Multiple Sclerosis; Yet 97% are Undiagnosed due to Poor Awareness. Lack of Treatment Can Result in Type 1 Diabetes, Thyroid Disease, Lupus, Liver Disease, Infertility and Cancer.
NEW YORK, Aug. 2 /PRNewswire/ — 3 Million Americans have celiac disease, but most don’t know they are carrying a genetic auto-immune condition that, untreated, can lead to serious health consequences including Type 1 diabetes, thyroid disease, lupus, liver disease, infertility and cancer. Despite these risks, only 3% of people with the disease are being treated and most of those suffer 11 years before the condition is correctly diagnosed. Why? Despite its prevalence, physicians and the general public are relatively unaware of celiac disease. Its symptoms, typically gastro-intestinal, can also include rashes, depression or irritability, and osteoporosis, as well as tooth discoloration, small stature, crankiness and failure to thrive in children. The variety of symptoms, combined with lack of awareness, often lead to misdiagnosis or no diagnosis, with serious health consequences for millions.
While this lifelong disease has no cure, it can be effectively controlled through diet. In fact, the only treatment for celiac disease is the strict elimination from the diet of gluten, a protein found in wheat, rye and barley. The prevalence of wheat flour consumption in the U.S. makes sticking to the diet a challenge. Cross contamination of gluten-containing foods with “pure” non-gluten foods is also an issue. Once-simple activities like food shopping and eating out become an ordeal.
Prevalence is Underestimated
Here is a comparison of the prevalence of celiac disease and other well- known conditions:
- Celiac Disease affects 3 million Americans
- Epilepsy affects 2.8 million Americans
- Alzheimer’s Disease affects 2 million Americans
- Ulcerative Colitis affects 500,000 Americans
- Crohn’s Disease affects 500,000 Americans
- Multiple Sclerosis affects 333,000 Americans
- Cystic Fibrosis affects 30,000 Americans
Source: National Institutes of Health.
Things to Look For
Celiac disease can manifest in children or adults. It may be dormant for years and can be triggered suddenly. And it can be a silent disease, doing damage with no symptoms at all. How can you tell if you or someone in your family might have celiac disease? Here are possible signs:
- Gastrointestinal problems, including abdominal pain, indigestion, reflux, vomiting, diarrhea as well as constipation.
- Irritability or depression
- Dermatitis Herpetiformis: a chronic, itchy skin rash
- Anemia
- Osteoporosis
- Infertility
- Chronic Hepatitis
- Particularly in children: crankiness, short stature, unexplained weight loss, dental discoloration, failure to thrive.
Other signs may be celiac disease’s long-term consequences if left untreated:
- Intestinal and lymphatic cancers
- Autoimmune conditions like Type 1 diabetes, thyroid disease, rheumatoid arthritis, Sjogren’s syndrome (drying of moisture-producing glands, affecting eyes, mouth, skin, etc.), and primary biliary cirrhosis, a liver condition.
An initial diagnosis can be achieved with a blood test. Confirmation of the diagnosis should involve an intestinal biopsy performed by endoscopy.
Two Case Studies
Celiac disease runs in families. Two years ago Jacob Hawkinson’s son Caden was losing weight and wasting away. Finally, after a series of fruitless medical tests and inconclusive diagnoses, the boy’s mother, a nurse practitioner, did her own research and decided to have Caden tested for celiac disease. He tested positive. Since the condition is genetic, the entire family was later tested. Caden’s older sister and 5 adult members of the family also had the condition. They are all now on a gluten-free diet and thriving.
The symptoms of celiac disease are not always the expected gastro-intestinal ones. Sasha and Kevin Wade were concerned when their son Luke’s performance at school suddenly declined in first grade. He seemed fine physically but was having trouble concentrating. He withdrew socially and his grapho-motor skills, which had been fine, fell behind. His teachers noted that he frequently seemed tired, sometimes even falling asleep at his desk, despite having had a full night’s sleep. The family put Luke through many tests and psychiatric evaluations and even considered Ritalin as a possible treatment for his attention issues if symptoms did not improve. At the last moment, Sasha took her son to one more doctor. Luke was ultimately diagnosed with celiac disease. Once he started a gluten-free diet, he experienced a dramatic turnaround.
Finding Gluten-Free Food: A Challenge For Consumers
Health food stores are the traditional source for gluten-free foods. However, mainstream food retailers are catching on to the fact that addressing food sensitivities is not only good customer service, but also good for the bottom line. For example, Wegmans, a mainstream supermarket chain with 68 stores in NY, NJ, PA and VA, carries gluten-free specialty brands in Nature’s Marketplace, its natural and organic foods department. What’s more, the company codes Wegmans brand product labels with a “G” when the foods are gluten-free. These foods are enjoyed by all Wegmans customers, but happen to be healthy for people with celiac disease as well. The company keeps an updated list of its foods that are gluten-free on its website. And it posts a celiac meal of the week on its site, helping people on a gluten-free diet find interesting meal options.
Ranked 1st on FORTUNE magazine’s 2005 list of the “100 Best Companies to Work For,” Wegmans is committed to providing user-friendly products for customers on a gluten-free diet. “We are happy to be able to help people with this serious condition find healthy solutions. Not all diseases have treatment options that are so clearly dietary,” says Jane Andrews, MSRD, Wegmans’ Corporate Nutritionist. Colleen Wegman, Wegmans’ president, adds, “In making gluten-free foods readily accessible to our customers, we hope to contribute to the good health of those with celiac disease while removing some of the stress they might ordinarily face while shopping for appropriate foods. This is Wegmans’ commitment to its customers and is central to our customer service philosophy.”
Advancing Science and Public Awareness
The Celiac Disease Center at Columbia University was created within the Department of Medicine in 2001. Its mission: to reshape the diagnosis, treatment and awareness of celiac disease through biomedical research, patient care, and physician and public education. Under the guidance of founding medical director Peter Green, MD, one of the few internationally recognized experts on celiac disease in the United States, the Center is the only medical school supported center in the US exclusively dedicated to the study and comprehensive treatment of celiac disease in children and adults. In November 2006, the Center will host an international conference on celiac disease, bringing under one roof the latest research and clinical practices from around the world.
“Because there’s a lack of knowledge about the disease and its symptoms in the U.S., people are put at risk and suffer for years prior to a correct diagnosis,” says Dr. Peter Green. “We need to educate both the medical and general communities about the signs of the disease, which are more diverse than previously thought. Then we have to encourage restaurants and food retailers to make it easier to find gluten-free products. Early diagnosis and treating the condition with a gluten-free diet can minimize the devastating effects celiac disease can have if left untreated.”
Outside the U.S., celiac disease is often commonly recognized, and gluten-free food easy to find. For example, McDonald’s in Helsinki offers gluten-free Big Macs with a bun. In Australia, gluten-free menus are available alongside regular menus in most restaurants. In Buenos Aires, gluten-free ice cream is available and labeled as such.
To Find Out More
To find out more about celiac disease visit
https://www.celiacdiseasecenter.columbia.edu
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