Celiac Disease Largely Undiagnosed in the USA

Hair loss, breaking teeth, a stillborn child, several miscarriages, weight loss, and a low-birth-weight baby were the experiences of Alice Bast, Executive Director of The National Foundation for Celiac Awareness, before her diagnosis of an inherited-autoimmune disease. She went through 7 years, 22 doctors, untold suffering and heart-breaking sorrow, before doctor #23 accurately diagnosed Celiac disease as the origin of her health problems.

Bast is not alone. According to the University of Chicago Celiac Disease Center, at least 3 million people in the United States have Celiac disease. 97% of them are undiagnosed and at risk for developing life threatening associated diseases and disorders.

Look below at the Signs and Symptoms of Celiac Disease and Diseases and Disorders Associated with Celiac Disease. If you or someone you care about suffers with seemingly unrelated symptoms (such as stomach problems and aching feet) or has any of the associated diseases and disorders, Celiac disease may be the culprit.

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Signs and Symptoms of Celiac Disease

depression, diarrhea or constipation, lactose Intolerance, bloating & gas, abdominal pain, itchy skin, rashes, discolored teeth, loss of enamel, fatigue, joint pain, unexplained weight changes, delayed growth, miscarriage, fractures, hard to flush bulky stools, canker sores, irritability, facial pain, sinusitis, tingling and numbness in hands and feet, acid-reflux disease, oily stools, unexplained anemia

Diseases and Disorders Associated with Celiac Disease

intestinal lymphomas, diabetes, Multiple Sclerosis, infertility, Iron-deficiency anemia, Sjogren's syndrome, Peripheral neuropathy,osteoporosis, osteopenia, Turner's syndrome. thyroid disease, Juvenile Idiopathic diabetes, Down syndrome, Williams syndrome

*Some people experience no symptoms. The damage occurs "silently."

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People with undiagnosed Celiac disease spend years trying to find out what is wrong with them. They endure numerous medical appointments, inconclusive medical tests, inaccurate diagnoses, and ineffective treatment plans. Relief only comes through accurate Celiac disease testing and a radical change in diet. Avoiding gluten is the only known treatment for Celiac disease.

Gluten is the storage protein found in wheat, barley, and rye. When a person has Celiac disease, even miniscule amounts of gluten cause an autoimmune reaction. The body attacks the gluten and damages the lining of the small intestine. Villi, finger-like like projections responsible for the absorption of proteins, fats, carbohydrates, vitamins, minerals, and water, become flat and unable to function. Without nutrients, every system in the body weakens, including the immune system.

Alice Bast noticed fewer symptoms and improved health after only 2 weeks on a gluten-free diet. The fact that it took her 23 doctors and 7 years to get a Celiac disease diagnosis is appalling. An earlier diagnosis may have spared her much suffering and the loss of her babies.

The obvious question is why a Celiac disease diagnosis takes so long. The answer comes from the leading expert on Celiac disease, Peter H. Green, MD, professor of clinical medicine at Columbia University Medical School. "Celiac disease is often missed because medical students are taught that it is a rare childhood disease. In fact, Celiac disease can appear at any point in life."

In addition, Celiac disease hides in the shadows of associated diseases and disorders. Doctors frequently diagnose autoimmune diseases, such as multiple sclerosis, lupus, diabetes, or irritable bowel syndrome, but fail to recognize Celiac disease as a potential root cause. The symptoms and manifestations of Celiac disease vary widely from individual to individual, so standard protocol for recommending testing is confusing, at best.

On a post diagnosis visit to my gastroenterologist, I mentioned my frustration in finding a family-practice physician who understands Celiac disease. He acted irritated and replied, "What do you expect? This disease isn't well known."

I expect doctors to become well-informed about a disease that affects 1/100 Americans!

Alice Bast, who founded the National Foundation for Celiac Awareness after her Celiac disease diagnosis, has made it her life mission "to increase knowledge and funding for Celiac disease that will advance research, education and screening." She points out that increased awareness "will lead to earlier detection, fewer complications, decreased medical costs, pain, suffering, miscarriages, malignancies, and other autoimmune diseases and stillbirths."

Organizations, like the National Foundation for Celiac Awareness, the University of Chicago Celiac Disease Center, and the University of Maryland Center for Celiac Research, work steadfastly to raise awareness about Celiac disease and the need for accurate testing for the 3 million Americans who have it but don't know it.

Could you, or someone you care about, be among them? Complete the "Symptoms Check-List" to determine if you need to consult with your doctor about getting tested for Celiac disease.

Sources:
Personal Experience
Chicago Celiac Disease Center
National Foundation for Celiac Awareness
University of Maryland Center for Celiac Research