- Beyond Celiac, globenewswire.com 1
The gluten-free diet is currently the only treatment for celiac disease, but it is far from a complete and effective intervention. That’s the message Beyond Celiac, the leading catalyst for a celiac disease cure in the United States, lists the top five challenges the gluten-free diet presents to diagnosis, disease management, quality of life and overall understanding of this serious genetic autoimmune condition.
“Beyond Celiac is focused on advancing the science of celiac disease because we know the gluten-free diet does not reliably and thoroughly work,” said Alice Bast, CEO of Beyond Celiac. “In order for our community to be able to eat without fear and avoid the host of other serious medical issues celiac disease can cause, we must shatter the myth that the gluten-free diet is enough and focus on the research and clinical trials that will produce the cure we so desperately need.”
The complete list and corresponding research of top five reasons the gluten-free diet isn’t enough can be found here. Highlights include:
1 – There’s a lack of healing on the gluten-free diet.
Studies have shown that people with celiac disease on the gluten-free diet continue to have symptoms, elevated antibodies to gluten detected in blood tests and damage to the nutrient-absorbing lining of the intestine, with the result being possible long-term health consequences. Non-responsive celiac disease, which is defined as persistent symptoms, signs or abnormalities typical of the condition despite 6 to 12 months of strict adherence to a gluten-free diet, affects up to 30 percent of patients.
2 – People think the gluten-free diet is so bad they don’t want to be tested, even if they are at risk.
Many with celiac disease report regret at having been diagnosed, especially if they were asymptomatic. This often includes at-risk family members who are reluctant to be tested largely because they have no symptoms and are concerned about changing their diet. They cite the costs of gluten-free food and knowing they have to give up food they love to eat as barriers to testing.
3 – Conversely, more people are putting themselves on the gluten-free diet without being tested for celiac disease because they think it is healthier, which has negative consequences for accurate diagnosis and potential appropriate healthcare follow-up.
The gluten-free diet has become a popular fad, which has a negative effect on celiac disease because the true extent of the condition can’t be determined if people are not tested and diagnosed. Those who go on a gluten-free diet without testing are potentially celiac disease patients who may not get appropriate follow-up care as a result. Furthermore, first-degree family members who carry an increased risk of celiac disease might go unscreened and undiagnosed if the family connection is not discovered.
4 – The diet can be so hard to follow that people with celiac disease sometimes cheat.
Twelve percent of more than 1,500 people with celiac disease surveyed by Beyond Celiac reported that they intentionally eat gluten at least some of the time, putting their health at risk. The survey also found that 57 percent are sometimes embarrassed about eating in front of other people at least some of the time, which might contribute to intentional cheating. Cheating is such a difficult topic in celiac disease that many of those who do it don’t like to admit it, even to their doctor. Researchers are grappling with the question of gluten in the gluten-free diet, both unintentional and intended.
5 – The gluten-free diet creates psychosocial challenges to living a happy life.
The burden of the gluten-free diet is substantial and often includes a significant negative impact on quality of life by limiting social activities and educational and employment opportunities. Eating out always carries a risk of gluten exposure. The constant focus on finding safe food on the gluten-free diet reduces time and energy for other aspects of life. Traveling for fun or work carries the extra stress of needing to find safe food. Additionally, the whole family, not just the person who has celiac disease, is affected. All of these facts of daily living impact quality of life.
In addition to physical health problems, children with celiac disease also suffer psychological impact of the condition, including mental health issues such as anxiety and attention-deficit/hyperactivity disorder (ADHD).
About Celiac Disease
Celiac disease is a serious genetic autoimmune disorder that affects an estimated 1 in 133 Americans, more than half of whom are still undiagnosed. The disease causes damage to the small intestine, resulting in debilitating symptoms, and if left untreated, can lead to serious long-term health problems including infertility and some types of cancer.
About Beyond Celiac
Founded in 2003, Beyond Celiac is the leading catalyst for a celiac disease cure in the United States, serving as a patient advocacy and research-driven organization working to drive diagnosis and accelerate the discovery of new treatments. By engaging with the top scientists in the field, making the right investments in research and supporting the broad community of those with celiac disease and gluten sensitivity, Beyond Celiac is creating a future in which people can live healthy lives and eat without fear – a world Beyond Celiac.