Kelsey Smith

An estimated 1 in 133 Americans are living with Celiac disease¹, an autoimmune disorder that causes damage to the lining of the small intestine in response to gluten. With nearly 300 documented symptoms ranging from abdominal pain, osteoporosis, fatigue, and infertility,² many individuals may not know they are living with the disorder.² The average waiting period to receive an accurate diagnosis is 6-10 years³, a considerable time for a disease which causes poor nutrient absorption and considerable impact on quality of life. The only current treatment is following a strict gluten free diet, including ensuring no cross contamination with any gluten.

Kelsey Smith understands the challenges of living with Celiac disease, a condition that may not be visible, but imposes serious restrictions around food and eating, impacting everyday life, culture, and community. According to Smith, ingesting a small amount of gluten can cause her to have an autoimmune response, such as brain fog, nausea, and exhaustion that can last several weeks, so she extensively plans meals and snacks to ensure her food is safe to consume.

After being diagnosed, Smith decided to accept a job in the Washington, D.C. area in part due to the variety of gluten free food options available in that area. Once there, she joined the Celiac Disease Foundation as a volunteer for the organization. Through the CDF, she participated in a conference that brought together researchers, advocates, and industry representatives, which solidified her relationship with the CDF and advocacy, according to Smith.

In fiscal year 2023, the US Congress added Celiac disease as a Peer Reviewed Medical Research Program Topic Area. The CDF nominated Smith to be a consumer peer reviewer for the CDMRP. "Your lived experience will bring so much more to the table than you can imagine," Smith said. "Scientists may know more facts about research being done, but you know more than they could ever imagine about the impact of that research."

Smith's lived experience with Celiac disease motivates her to train others to become advocates at the local and national levels. The hardships she faces due to her diagnosis give her a greater sense of empathy for others who may also be "fighting a battle you may never see," according to Smith.

"We just need more resources identifying symptomatic treatments and to get some kind of relief while we wait for that cure," Smith said. "We [those with Celiac disease] suffer a lot more than is generally understood."

The views, opinions, and/or findings contained in this paper are those of the author(s) and should not be construed as an official Department of Defense position, policy, or decision..

References

¹Celiac disease. Johns Hopkins Medicine.
https://www.hopkinsmedicine.org/health/conditions-and-diseases/celiac-disease

²Celiac Disease: Fast Facts.
https://www.beyondceliac.org/celiac-disease/facts-and-figures/

³What is Celiac Disease? Beyond Celiac.
https://www.beyondceliac.org/celiac-disease/