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Raise Awareness for Celiac Disease

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!

Photo: CC - jaliyajSo 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.

Another reason for difficulty in diagnosing celiac disease is the fact that doctors usually miss the diagnosis because they don't realize how variable the disease can be. There are numerous gluten intolerance symptoms. People with celiac disease aren’t able to properly absorb essential nutrients because the villi, the absorptive fingers in the small intestine, have been damaged or destroyed.

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.

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5 Responses:

 
Michael
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said this on
16 Apr 2012 11:08:26 AM PST
Miranda Jade, I think you did a good job with this article, I commend your effort and thank you. I will send a link to it to a friend. However, I am curious as to how you chose to say "it takes an average of four or more years before the correct diagnosis of celiac disease is made". A couple of years ago it was being written that the average was 11 years, and the average age of diagnosis was going up, and was 49. I was diagnosed after a lifetime of suffering, at the age of 55, 5 years ago. My search started at the age of 19, with severe upper abdominal pain, inability to keep food down, fatigue, etc. (I had these problems and asthma, bronchitis and pneumonia as an infant), when I went to a gastroenterologist, who witnessed pyloric spasms, and misdiagnosed me with a "nervous stomach". So, it took me my first 36 years as an adult to get a diagnosis. Dr. Peter H.R. Green was so right to criticize his profession, and particularly his specialty, in 2008, for celiac not even being "on their radar screen."

 
Barb
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said this on
16 Apr 2012 6:48:14 PM PST
I still get sick even on a gluten free diet. It progresses for those who don't find out about it as I did not for the same reasons. I was sick for many years and now it does not matter if I don't eat it. I still get sick in other ways.

I think the article was good but not complete for the reason I said here.

 
sue
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said this on
17 Apr 2012 11:36:09 AM PST
Take these words to heart. If you suffer from this you know who you are.

 
gluten
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said this on
18 Apr 2012 10:35:29 AM PST
When my doctor said I should eliminate all grains from my diet it didn't sound good. But after a few short weeks I started to get my energy back. The difference is remarkable! No longer have bloating and people have mentioned how much healthier and slimmer I look. Some people say it's hard to adjust to a gluten diet, but I have had a wonderful time trying out all the new foods and methods of cooking.

 
Trina
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said this on
08 Aug 2012 4:52:13 AM PST
I myself have been going for years with symptoms before finally being diagnosed with celiac disease this year. I am slowly starting to come around, but i am sometimes overwhelmed when it comes to grocery shopping and meal preparing. I still experience some symptoms and am hoping the damage is reversible. I plan to help create awareness of this disease so that people don't have to suffer many years of feeling horrible and sick. I think what you are doing is great: we need dedicated people to help those who have not been diagnosed yet and to guide those who have. I would love to help!




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