"Mom, am I ever going to be able to go back to school? Am I ever going to be able to go to college?"
That’s what Mitchell Gaer asked his mom Courtney one day. When Mitchell was 10, he developed severe back and leg pain, headaches, sore throat, mouth sores and fatigue in an odd pattern that started at Sunday night and then lasted until Friday like clockwork. At first it was suggested he was trying to avoid going to school. There was even one doctor that concluded that his problem was psychological and refused to treat him after that. He missed 90 days of school his freshman year. All this, despite never having classic gastrointestinal celiac disease symptoms and his original celiac disease blood test coming back negative. It took four years of debilitating symptoms before Mitchell got his diagnosis. For a disease that affects an estimated 3 million people, this is unacceptable.
What I Wish You Knew is our theme for Celiac Awareness Month 2017. For the month of May, Beyond Celiac will take the opportunity to work with our community to raise awareness about a serious genetic autoimmune disease that affects nearly 1% of the population in the United States.
Celiac Disease 101
Celiac disease is triggered by consuming a protein called gluten, which is found in wheat, barley and rye. When people with celiac disease eat foods containing gluten, their immune system responds by damaging the villi of the small intestine, rendering the body unable to absorb nutrients into the bloodstream, which can lead to malnourishment.
People with celiac disease are at-risk for serious health consequences such as depression, anxiety, other autoimmune diseases, osteoporosis, thyroid disease, intestinal damage and even certain cancers.
The typical celiac diagnosis takes 6-10 years to achieve. It’s estimated that 83% of the people with celiac disease in the United States are undiagnosed or misdiagnosed.
Once diagnosed, the only treatment available is a diet free of gluten. Easy, right? Not so fast.
Despite strict adherence to the gluten-free diet, recent research shows that up to one-third of people with celiac disease continue to experience intestinal damage caused by the body’s immune response to gluten even after a year on the gluten-free diet.
What’s more, our daily lives are constant series of adaptive behaviors to protect ourselves from what to most people is a benign substance. We have to avoid contact with gluten, which is not only found in wheat, barley and rye-containing foods such as bread, crackers and cereals, but also in medications and non-food items that may be accidentally ingested, such as lipstick or even playdoh.
The people in our community travel with suitcases of “safe” foods in tow. Some pick their colleges based on safety in the cafeteria rather than content in the classroom. Many of us do not eat anything that does not come from our own kitchens. In a 2014 study, 25% of patients said the diet is so burdensome they regretted being diagnosed at all and would rather have continued having symptoms.
The Call for More Research
We need better. But there simply has not been enough research about the disease. The medical, biomed and research communities do not know enough yet. This lack of knowledge is at the heart of the struggle.
That is why Beyond Celiac is building an on-line community to make sure that people with celiac disease are at the table in research efforts. Our goal? Improving quality of life, accelerating potential treatments beyond the gluten-free diet, and potentially discovering a cure.
Beyond Celiac is fostering a community where research scientists, medical professionals and people with celiac disease have the same focus and respect for each other’s roles in moving the field forward. Until science has advanced an effective treatment beyond the gluten-free diet for celiac disease, Beyond Celiac will remain vigilant. We will continue to push for increased access to safe, gluten-free food options to help people manage their celiac disease. We will continue to offer in-depth and evidence-based information and free resources at www.BeyondCeliac.org. A we will continue to be a trusted resource for our community until we find a cure.
I’m happy to report that Mitchell is doing much better, now that he has a diagnosis and is on a strict gluten-free diet. You can hear his whole story, plus others in our Celiac Straight Talk podcast series.
We invite you to participate in the “What I Wish You Knew” campaign using the #WIWYK hashtag. You can share information with the broader community through social media and on-line resources that include a series of podcasts, an infographic, an ecookbook and more. Please help us raise awareness about celiac disease. Our lives are riding on it. Visit www.BeyondCeliac.org or www.facebook.com/beyondceliac.