Affecting 1 in 100 people worldwide, and an estimated three million Americans, celiac disease is one of the most prevalent genetic autoimmune diseases. Interestingly, the prevalence of celiac disease among the Ashkenazi and Sephardic Jewish population is higher still, at approximately 1.83% and 1.39% respectively. Marilyn G. Geller, Chief Executive Officer of the Celiac Disease Foundation, was recently interviewed by the Jewish Journal, the largest weekly Jewish newspaper in the United States, to draw attention to this serious and severely underdiagnosed disease.
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The Little Known Dangers of Celiac Disease
According to the Celiac Disease Foundation, the disease causes the body a number of issues, including attacking its own small intestine. This can result in heart disease, cancer and other severe health conditions.
Over the past decade, nutrition labels and restaurants have been increasingly offering gluten-free options, bringing celiac disease into the public eye.
However, the disease is more serious than people realize. According to the Celiac Disease Foundation, a Woodland Hills-based organization that invests in biomedical research to find a cure, the disease causes the body a number of issues, including attacking its own small intestine. This can result in heart disease, cancer and other severe health conditions.
Additionally, celiac disease is one of the world’s most prevalent genetic autoimmune diseases and affects an estimated three million Americans. The only treatment, currently, is adhering to a radically gluten-free diet; ingesting even small amounts of gluten, even crumbs, can cause long-term health issues.
In May, which is Celiac Awareness Month, the Celiac Disease Foundation announced that the NIH issued its first research grant for celiac disease.
“Improving the quality of life for celiac disease patients and their families will always be the top priority of the Celiac Disease Foundation,” said Marilyn Geller, chief executive officer of the organization. “We are working tirelessly toward treatments and a cure for celiac disease.”
The NIH grant is significant, considering that there is currently a lack of research committed to celiac disease.
“Unfortunately, for the millions who suffer, the disease has largely been ignored by our federal government, which provides little to no funding for research nor for public awareness of its serious consequences,” said Geller. “NIH plays a central role in the expansion of biomedical knowledge. Every drug approved by the FDA since 2010 had its start with NIH-funded research.”
The NIH published the Notice of Special Interest funding opportunity for celiac disease research in December of last year. Before that, Congress launched the first Celiac Disease Caucus, chaired by Congresswoman Betty McCollum (D-Minn.), who has celiac disease.
While the foundation is celebrating the news, they are going to keep advocating for more research until a cure is found.
“Our work is not done, as each year we must ask Congress to continue to fund celiac disease research,” said Geller.
As a mother of a son with celiac disease, the issue is near and dear to Geller. Her son was ill from birth, and the best specialists in Los Angeles didn’t understand why.
“He suffered from unbearable pain, can’t-get-out-of-bed fatigue, endless stomachaches, headaches, medical procedures and, at the lowest point, in middle school, would say to me, ‘Mommy, my brain is telling me to kill myself again, and I don’t want to. Please help me,’” said Geller. “It was a 15-year ordeal until a doctor finally ordered a blood test for celiac disease.”
Although Geller said she was grateful to have finally received a diagnosis, the implications of celiac disease are physically and mentally taxing. Her son was diagnosed with thyroid disease and vitamin deficiencies, which is common in people with the disease.
“[He] continues to suffer from chronic back pain and fatigue, and will always have an increased mortality risk, even with his strict adherence to a gluten-free diet,” she said.
While gluten-free food is becoming more and more available, it’s not possible for people to always avoid gluten.
“There is no such thing as a gluten-free diet because of the constant risk of cross-contact with gluten, with gluten in 80% of our foodstuffs,” said Geller. “Something as simple as a server removing croutons from a salad that [my son] ordered without, instead of making a clean salad, can leave him experiencing symptoms similar to food poisoning for days.”
ACCORDING TO THE FOUNDATION, WHICH WAS FOUNDED IN 1990, IT’S NOT UNCOMMON FOR CELIAC DISEASE TO GO UNDIAGNOSED; AN ESTIMATED 60-70% OF AMERICANS ARE STILL UNDIAGNOSED.
According to the foundation, which was founded in 1990, it’s not uncommon for celiac disease to go undiagnosed; an estimated 60-70% of Americans are still undiagnosed. In addition, people with a first-degree relative like a parent, sibling or child with celiac disease have a one-in-10 risk of developing it themselves.
The prevalence of celiac disease among Ashkenazi Jews is 1.83% and among Sephardic Jews is 1.39%, compared to the worldwide average of 1%l.
“Celiac disease is genetic and is strongly linked to the HLA-DQ2 and HLA-DQA genes, which are found more commonly in Caucasians of European ancestry,” said Geller. “However, while about 30% of the overall population carries these genes, only 3% of that group actually develops celiac disease. Because of this, researchers believe there may be environmental factors that trigger celiac disease.”
Along with advocating for research, the Celiac Disease Foundation promotes labeling standards for gluten-free foods, offers patient and provider education and has a network of student ambassadors. The foundation also provides a Symptoms Assessment Tool on their website that people can take and give to their doctor to see if they might be suffering from the disease.
Even though people joke about gluten-free and celiac disease being overdiagnosed, Geller stressed that it’s not a laughing matter.
“AMERICANS ARE DYING BECAUSE WE HAVEN’T PAID SUFFICIENT ATTENTION TO THIS DISEASE. WE ARE WORKING TIRELESSLY TOWARD TREATMENTS AND A CURE.” – MARILYN GELLER
“Despite what you might see in popular media, celiac disease is not a fad,” she said. “It is not a punchline. Americans are dying because we haven’t paid sufficient attention to this disease.”
Still, she is grateful for those who do take the disease seriously, including the NIH and the foundation’s supporters.
“We are working tirelessly toward treatments and a cure for celiac disease,” she said. “All of our work on behalf of the celiac patient community, for adults and children, is made possible by the generous support of individual donors.”