Jaqui Karr, the best-selling author, speaker and corporate consultant, recently wrote a read-worthy article in Whole Foods Magazine, “The Celiac 1% Myth and Why the Real Numbers Matter.”
Karr claims the celiac disease prevalence of 1% is a myth, that the real number is much higher. She says the one percent number is based on a 2003 study of .00004 of the United States population and Karr claims it’s time for an update.
According to Karr, the massive flaw is the testing itself. Current testing requires results of a biopsy of the small intestine that show total villous atrophy. If damage isn’t at the worst level, then the test result is “negative.”
We already know many factors can impact the blood tests, and if a person tests “negative” on the blood test the endoscopy with biopsy will not be pursued. The blood tests are not, after all, pass / fail. They simply measure the level of antibodies present. These levels can rise or fall depending on circumstances. We hear from patients that their doctors tested them years ago and told them they were negative, without ever testing again. The blood tests should be re-administered in three to six months if symptoms continue or worsen.
She goes on to say 35% of the United States population has the genes for celiac disease. She states that people are living on some level of a disease spectrum which is affecting them and impacting their lives. She calls them ticking time bombs waiting to go off and send them to the emergency room, which is what happened to her.
Karr adds that people with celiac disease have a 39% increased risk of death and non-celiac gluten sensitivity increases the risk of death by 3 to 4 time. We know from the study she cited that this increased mortality decreases in time following diagnosis and treatment with a gluten-free diet.
She continues by saying for every person successfully diagnosed with celiac disease, 8 are not. These people are suffering, misdiagnosed or prematurely dead.
Karr concludes by stating that the 1% prevalence was never really 1%, that we are seeing people damaged by gluten at 30 to 50 times more than realized. She says it is time to improve the tests, improve recognition and get the people who need help the help they need.
What do you think? Doe you agree with Karr that celiac disease affects more than 1% of the population?