by Christine David |
Experts estimate that 3 million people in our country are living with celiac disease, which is approximately the same number of people living in the entire state of Nevada. Unfortunately, 97 percent of the people with celiac disease go undiagnosed. To put this in perspective, this magazine has a monthly readership of about 50,000 people, which means that about 400-500 people reading this article have celiac disease and do not even know it.
There are serious consequences for the people who are not diagnosed. Recent studies have shown a 400-percent increase in the risk of death for people with undiagnosed and untreated celiac disease. Early diagnosis is the key to preventing future complications like infertility, osteoporosis, an increased risk of some cancers, neurological conditions, or the development of other autoimmune disorders. It is unfortunate that many doctors in the Unites States incorrectly believe that celiac disease is extremely rare. Because of this misconception, the average time from the onset of symptoms to a diagnosis is about 10 years.
My journey to being diagnosed with celiac disease was a very long one. My initial symptoms began when I was a toddler, and I was not diagnosed until I was 30! As a child I had frequent stomach aches, headaches and ADHD like symptoms. As a teen I had irregular periods, iron deficiency anemia, stress fractures, extremely dry skin and was frequently sick. All of these are possible symptoms associated with the effects of undiagnosed celiac disease. Throughout my twenties, frequent digestive problems brought me to many doctors, who told me to eat more fiber (which made me feel worse), to take antacids or anti-gas medications, or to just take painkillers to numb the pain. One doctor even told me that I was probably depressed; that my symptoms were all in my head and that is why I had so many symptoms he could not explain.
At the age of 24 I was diagnosed with autoimmune thyroid disease, and that was my first step towards finding out I had celiac disease. Over the next few years I developed new symptoms of aching muscles and joints accompanied by fatigue and lethargy. When I became pregnant at 30 I decided to see a thyroid specialist during my pregnancy. At my first appointment with the endocrinologist, she was surprised that I had to take such a high dose of my thyroid medication, and was concerned that I was not absorbing the medication for some reason. She decided to test me for celiac disease and malabsorbtion. My test results were positive for celiac disease and for nutrient deficiencies. Since I was pregnant at the time, I was advised to begin a gluten free diet immediately to minimize the risks of birth defects or miscarriage that are associated with untreated celiac disease. During my pregnancy, it did not really hit me how many areas of my life would be affected by living gluten free. I just concentrated on learning about eating a healthy gluten free diet, knowing it was the best thing for my baby.
Last month, one of the goals in my article was to help people become more aware of when to ask their doctors to test them for celiac disease by highlighting common symptoms and related conditions. Another challenge in detecting this disease is its’ lack of symptoms in some people. In the landmark prevalence study on celiac disease, it was determined that 41 percent of adults and 60 percent of children diagnosed during this study did not show any symptoms.
There are some things we can learn from other countries that have similarly high rates of celiac disease in their population. In countries like Italy, where the rate of celiac disease is one in 250, or Ireland where the rate is one in 300, doctors have a much greater awareness of the disease and they are more proactive in diagnosing it. For example, in Italy, they screen all children by the age of six for celiac disease, even if they have no symptoms.
In the United States, celiac disease is estimated to be 2-3 times more prevalent than it is in Italy or Ireland, yet here we have no standard screening protocols, even in higher risk populations.
Large amounts of money are wasted each year on unnecessary medical tests and treatments, when what is really needed are celiac disease tests and treating the cause of the disease by removing gluten from the diet. “We now have evidence that the increased awareness and diagnosis of celiac disease would benefit not only the patients but would result in health care cost savings,” said Peter HR Green, M.D., professor of clinical medicine and director at Celiac Disease Center at Columbia University Medical Center. I believe this is important to know so that you can feel more comfortable asking your doctor and insurance company to pay for testing if you have any symptoms or a health condition that may increase your odds of having celiac disease.
Christine David enjoys living a Gluten-free life in Minnesota. She can be reached at (952) 484-5936.
