Celiac.com 04/13/2012 - There is a disease that affects one in every hundred Americans and causes physical and mental agony yet once it’s diagnosed, it can be easily treated with a change in diet and without the administration of drugs. You maybe haven’t even heard of it. You would think that the sufferers of this disease would be rather lucky to have such an easy treatment option available to them, right? As a matter of fact, it turns out that this disease—celiac, or coeliac, disease—may be easy to treat, but it’s very difficult for doctors to diagnose, and for the very reason that doctors haven’t heard of it either. It’s estimated that three out of every hundred of the people with celiac disease has been diagnosed. Only three out of every hundred!
So why is it that most celiacs suffer without diagnosis? Low awareness in this country means low awareness in the medical community about this disease. If you’re like most Americans, you probably haven’t even heard about it before you read this article. With celiac disease, a component of wheat, barley, and rye, called gluten, causes an immune reaction that attacks the intestine and can affect the entire body.
Other symptoms and problems caused by this autoimmune disease include diarrhea, fatigue, abdominal pain, bloating, gas, distention, weight loss, constipation, irritable bowel syndrome, vomiting, short stature, iron deficiency with or without anemia, failure to thrive in infancy, poor performance in school, delayed puberty, infertility, recurrent miscarriage, elevated liver enzymes, Down syndrome, Sjogren's syndrome, canker sores, arthritis, depression, osteoporosis, vitamin deficiencies, tooth discoloration and dental enamel defects, skin disorders, autism, nerve and balance problems, irritability in children, seizures, and migraines.
Additionally, there seems to be a slightly increased risk of lymphomas and gastrointestinal cancers. Many symptoms of celiac disease look like many other diseases, sicknesses, etc so it is very deceiving. Doctors don't think of celiac disease, as it isn’t stressed in medical school or doctors are taught that the symptoms of the disease are always dramatic, which isn’t true. Doctors are, however, becoming more aware of the disease. However, it takes an average of four or more years before the correct diagnosis of celiac disease is made in the very small percentage who are correctly diagnosed at all.
Celiac disease is easy to test for. Simple blood tests detect the disease over ninety percent of the time. The diagnosis is then confirmed by an upper endoscopy; a small, flexible tube is slipped into the mouth of the sedated patient, down his esophagus and stomach and into the first part of the small intestine, called the duodenum, where biopsies are taken and then examined for changes seen in celiac disease.
Even simpler than testing for diagnosis is the treatment of the disease—a gluten-free diet. It is challenging and requires a lifestyle change, but with more and more gluten-free substitutes and gluten-free recipes available, adopting a gluten-free diet and gluten free cooking is easier than ever. There's research into developing a pill that would help people with celiac disease, as well.
A few years ago I had many painful symptoms and bouncing from doctor to doctor with no diagnosis. I finally happen to fall into the hands of a doctor who very much knew about celiac disease and tested me for it. It took a lot of time and determination, and most people aren’t able to devote themselves to this degree. It’s really not right that millions of people are suffering from this disease with no diagnosis. A disease that can treated so easily yet the diagnosis for which is so elusive, when simply educating doctors in its symptoms would bring these people such relief.
While efforts are surely being made to get the U.S. government to fund research and to raise awareness for this disease, there are some things you can do yourself besides just writing your representatives, which I highly suggest you do. If you were to send out this article to a hundred people or speak to the same number of people about this subject, chances are, you would come across a sufferer of celiac disease and you would change that person’s life. Better yet, post it on a blog or forward it to friends and have them forward it themselves. In this way, you may be able to contact many more than a hundred people. The increased awareness will lead to increase relief.