Posted: 05/01/2014 5:48 pm EDT
What if the biggest barrier to celiac disease diagnosis is
its very treatment -- the gluten-free diet?
Many factors play into the low diagnosis rate of celiac
disease, but this could very well be one of them. The gluten-free diet has
taken on a life of its own. It's often portrayed as a weight loss diet, and
endless athletes and celebrities tout the perceived health benefits of "going
gluten-free." You've probably heard all the buzz. You can lose weight fast
on a gluten-free diet. Your skin will look so much better if you cut out
gluten. Your overall health will improve without gluten.
But those statements are nothing more than just myths.
We are constantly inundated with messages from the media
about the "magic" of a gluten-free diet. While some share accurate
information with the masses, many irresponsibly perpetuate a cycle of misinformation,
leading to the amplification of the gluten-free diet and the silencing of
celiac disease.
May is Celiac Awareness Month. It's a prime time for those
with celiac disease and non-celiac gluten sensitivity ("gluten
sensitivity") to pull together and rise above the noise of the gluten-free
fad diet. And while Celiac Awareness Month is an exciting time for our
community, it's not just about us. It's about the 83 percent of you out
there living with celiac disease and not even knowing it.
That statistic is shocking, isn't it? An estimated 3 million
Americans are living with celiac disease, but only a mere 17 percent of them
know it. Celiac disease is not the trendy condition it's made out to be. It's a
serious genetic autoimmune disease that, left untreated or mismanaged, can lead
to a host of health consequences, like osteoporosis, infertility and recurrent
miscarriages, iron deficiency anemia and even certain cancers like lymphoma.
Unlike people living with other autoimmune diseases (like Type 1 diabetes,
rheumatoid arthritis or multiple sclerosis), those with celiac disease are
lucky to know what launches their body's violent attack on itself. Gluten.
You see, gluten isn't some fattening ingredient or the
golden ticket to weight loss -- it's a protein found in wheat, barley, rye and their
derivatives. The majority of people have no issues with gluten and experience
no ill-effects from eating it. For the 1 percent of the population who carry
the celiac disease genes, though, gluten triggers an autoimmune response,
resulting in damage to the villi of the small intestine, leaving them unable to
absorb essential nutrients from food. But celiac disease doesn't just affect
the gut. It can impact almost every system of the body, and can prevent them
from working properly as a result of malnourishment or other complications.
Limited research suggests that up to another 6 percent of the population may
live with gluten sensitivity. While gluten sensitivity produces similar
symptoms, it does not result in the same intestinal damage celiac disease
causes. Despite this, people with gluten sensitivity rely on the gluten-free
diet to relieve their symptoms.
Casually experimenting with the gluten-free diet could
prevent you from receiving an accurate diagnosis as people must be on a
regular, gluten-containing diet in order to be accurately tested for celiac
disease. (Dr. Call does not necessarily agree with the above statement.) Additionally, since celiac disease is
genetic, not having an official diagnosis could rob your family members of
receiving their own diagnoses that might prevent a cascade of devastating
complications. First- and second-degree relatives of people with celiac disease
are more likely to develop the autoimmune condition, which means they should
talk to their doctor about getting tested. And because many people with celiac
disease don't experience any symptoms at all, it's important that family
members understand their risk.
What's more, the mentality of the gluten-free fad harms
people living with celiac disease every day because it creates an environment
where food safety is left out of the conversation. It affects the child who
can't go away to summer camp for fear of getting sick. It prevents high school
students from choosing a university that caters to their academic interests. It
causes restaurants to serve food that has been unsafely prepared, putting the
health of diners at serious risk. Did you know that just a few crumbs of
gluten-containing food is enough to cause intestinal damage?
These are complicated issues and it will take focus and
discipline to advance a patient-centered agenda and move the bar on diagnosis.
But I am humbled by the everyday heroes in our community who are devoted to
restoring their own health and the health of those around them.
I encourage you to visit the National Foundation for Celiac
Awareness (NFCA) to meet our Celiac Awareness Month Heroes and learn more about
how you can be a hero, too. Join our conversation on Facebook and Twitter to
help us change the dialogue. Let's give celiac disease the attention it
deserves -- not just for those of us who are already diagnosed, but for those
of you who aren't.
