By Maria Luci, director of research engagement
At Beyond Celiac, our mission is to bring patients and partners together to drive diagnosis, advance research, and accelerate the discovery of new treatments and a cure. No matter the project, we always keep our community front and center. You are why we work tirelessly to make life better for everyone living with gluten-related disorders. And while we hear from our community every day through email, social media, events, and more, we like to compile important information regularly through our registry, Go Beyond Celiac, and via semi-annual community surveys. This year, we hosted another community survey to learn more about you and your experiences with living with celiac disease and non-celiac gluten sensitivity.
The patient voice is incredibly important in helping researchers, scientists, regulators, and clinicians understand life with celiac disease and what is important to those living with this serious autoimmune disease. In the survey, we explored diagnosis, symptoms, managing the gluten-free diet, and interest in treatments in addition to and instead of the diet.
Though the numbers have improved significantly in the last two decades, research indicates that celiac disease is still highly undiagnosed. It is estimated that up to 83% of Americans who have celiac disease don’t know it. It can take years for someone to be accurately diagnosed, and many go on a gluten-free diet before they know if they have celiac disease or not, which makes testing inaccurate.
In our 2022 community survey, 72.4% of respondents had been diagnosed with celiac disease by a medical provider. 17% had a family member with celiac disease or another gluten-related disorder (83% of these respondents report being parents).
11.5% of respondents had been diagnosed in the last year. 37% had been diagnosed over 10 years ago!
9.5% of respondents state that they never experience celiac disease symptoms, and therefore are unsure if they are exposed to gluten. 5.6% report experiencing symptoms more than once a week. 27.4% stated that their symptoms significantly limit their ability to carry out everyday activities or functions.
Neurological manifestations of celiac disease relate to symptoms affecting the nervous system. 57.8% of respondents also stated that their symptoms were neurological in nature. Because we in the community keep raising our voice, more researchers are now paying attention to non-GI symptoms of celiac disease like brain fog, numbness, or headaches. (Beyond Celiac is even funding research into gluten-induced brain damage.)
Only 11.8% of respondents said that the gluten-free diet is completely sufficient treatment for their condition. 21.8% said that the diet was not at all sufficient to treat their condition. 47.5% of respondents said they wanted a treatment to replace the gluten-free diet.
While over 91% of respondents said they never intentionally eat gluten, 4.5% did say they ate gluten at least once a month. 1.05% reported eating gluten more than once a week. However, the total percentage of respondents saying they intentionally eat gluten has declined since our 2016 community survey, where 12% reported that they did.
When it comes to clinical trials, 76.4% of respondents said they would or maybe would be interested in participating in a trial. This is encouraging news because treatments can not move forward without patient participation. We thank everyone in our community who has helped move research forward through participating in clinical trials, donating, spreading awareness, or joining studies.
1,734 people completed the survey, with 1,255 reporting that they are medically diagnosed with celiac disease. The rest were parents/caregivers, live with non-celiac gluten-sensitivity, or are interested in the gluten-free diet and celiac disease for other reasons.We also thank all of you who filled out the 2022 community survey! Beyond Celiac will be presenting more exciting survey learnings at the celiac disease conference ICDS this October.
If you’re interested in continuing to move research forward, you can join our patient registry, Go Beyond Celiac, and take our research surveys!