Beyond Celiac Projects

We value the strong connection and relationship with our community. Beyond Celiac knows that our robust social media network and online community provides the unique opportunity for us to learn more about your behaviors, attitudes, opinions and medical history. It is this very information that doctors and researchers need to know in order to advance the field of celiac disease.

By connecting with the community through social media and surveys, we have learned the issues that have the largest impact in your day to day lives. We have ventured into many research projects designed to better understand the issues you face so that, together, we can work to address them in the best way possible.

Below is a sample of the work that Beyond Celiac has done to make sure that your voices are heard within the research world.

Uncovering diversity and disparity in celiac disease

Beyond Celiac partnered with the National Minority Qualify Forum (NMQF) to target inequalities in celiac disease diagnosis and treatment.

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Collecting patient stories to advance research

Beyond Celiac created the Go Beyond Celiac research database to collect self-reported data to learn more about life with celiac disease and help researchers better understand this serious genetic autoimmune disease.

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Directly funding innovative research

Because celiac disease research is underfunded, Beyond Celiac has crafted a plan and begun offering grants to help fund the most promising celiac disease research.

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Recruiting for clinical trials

Patient participation in research is critical to developing treatments and a cure for celiac disease. Because of this, Beyond Celiac has begun helping pharmaceutical companies find appropriate patients for their studies. Since 2016, Beyond Celiac has successfully recruited patients for a number of clinical trials and was named the exclusive patient organization to recruit for the first-ever Phase 3 Clinical Trial for celiac disease.

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Highlighting patients worry about gluten in medications

A study funded by a Beyond Celiac grant shows how much celiac disease patients and those who have gluten sensitivity worry about gluten in drugs.

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Comparing celiac disease management at centers vs. community settings

Beyond Celiac examined the difference working with an experienced celiac disease specialist makes in the lives of people living with the condition.

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Offering continuing education on the impact and barriers to diagnosis 

Beyond Celiac offered a continuing medical education program for medical professionals, designed to educate them on all aspects of celiac disease. Following the program, Beyond Celiac evaluated the results and the program’s impact on the celiac disease community.

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Researching the neurocognitive effects of gluten exposure patients worry about gluten in medications

Beyond Celiac researched the phenomenon known as “brain fog” by the celiac disease community to better understand how it affects people with this serious genetic autoimmune disease.

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Comparing the use of disease symptoms checklist in self-initiated diagnoses of celiac disease and non-celiac gluten sensitivity

Beyond Celiac research discovered more people are likely to seek a celiac disease test rather than it being first suggested by their doctor.

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