Creating a Caring, Healing, Solution-Oriented Community

As the past decade unfolded, due to improved access to information and ease of communication via the internet, it became increasingly clear that celiac disease and many other autoimmune diseases were largely unknown to many physicians.

Misdiagnosis and lack of diagnosis was a critical problem, and reliable information on diagnosis, treatment, and coping with these diseases was largely unavailable. To make matters worse, patients and their families were reluctant to tell the whole story. They felt isolated, ashamed, discouraged, and desperate as they searched for help. One of GAI’s first priorities was to listen, connect, engage, and educate this community of patients, families, and physicians.

Connecting Resources to Those who Benefit Most

Funding a Multi-Disciplinary Approach to Diagnoses and Treatment

It was clear to GAI and CNMC, along with many others in the celiac disease and autoimmune disease community, that co-occurring disorders were under-recognized and diagnosed. Not only are they unlikely to be accurately diagnosed, but many celiacs never recover and their additional illnesses, autoimmune conditions, and neurological disorders go undetected.

In addition, patients who are diagnosed are not afforded critical support and necessary basic information in several areas necessary for their optimal health. First, they need to know if they have any other conditions, autoimmune diseases, and neurological disorders that exist in addition to their celiac disease that may not improve with diagnosis and adopting the necessary gluten-free diet. Second, they need guidance and education in managing their new gluten-free diet. Finally, they need emotional support to cope with their new challenges and to manage their past and present grief and anxiety.

The best solution to this pressing need was to bring multiple specialists together to meet with the patients and their families, to develop a coordinated system of care. In addition, it was important to develop a clinical research project to gather valuable information in the furtherance of the scientific study of celiac disease.

To achieve these goals, from 2017 through 2020 GAI granted CNMC $1.5 million to establish and operate a new Multidisciplinary Clinic for celiac disease patients. At this Clinic patients and their families are provided consultations with an experienced team including a Gastroenterologist, Neurologist, Dietician, Psychologist, and a celiac disease Educational Specialist. The model developed at the CNMC Multidisciplinary Clinic is now the gold standard, nationally and internationally, for celiac disease patients.

The Clinic has also undertaken selected research experiments. A clinical study on the neurological disorder headaches was conducted. Patient bio-samples have been collected and preserved for future study and one scientific investigation of T-cell behavior was attempted; however, this was deemed unsuccessful and was discontinued without findings.

On the advent of COVID-19, CNMC’s Celiac Clinic developed a comprehensive and well-received telemedicine operation. Originally contemplated and planned (pending changes in applicable laws and regulations) as a solution for underserved populations, such as those in rural areas in the far reaches of Maryland, the Clinic seamlessly adapted its coordinated system of care to the telemedicine format for all of its patients. This proved advantageous to the Clinic patients and their families, well beyond the importance of minimizing in-person contact due to the pandemic, and likely even improved the quality of care.

Looking Forward

GAI is extremely proud of the progress and changes in which we have played a part in the autoimmune disease community at large. Millions of patients, each an individual on a unique journey, their families, and those who care about them, are in need of help and support. We will continue to increase our reach to assist more individuals, and help validate, encourage, care for and respond to their challenges and needs.

Our team has been inspired by the enthusiastic response to and widespread interest in our rapid response communications during the COVID-19 pandemic via our website and our social media outreach. GAI has created a uniquely comprehensive resource allowing anyone seeking answers to access the science-based information that becomes available at a dizzying pace. Our team will continue to recognize and respond to the most urgent needs in our community, as quickly as possible. A nimble organization by design, we will continue to adapt our approaches to the constantly shifting ways in which people communicate and choose to receive information.

During the past few years, GAI has seen great strides in the field of AD. Physician specialists are increasingly focusing on autoimmune disease and how it relates to the diseases they treat. Almost overnight many medical specialty conferences now include lectures, panel discussions, and workshops on how AD affects their patients. Much important scientific research is underway, bringing the scientific and medical communities closer to significant answers, making many important connections. Private industry is paying attention and university and industry collaboration continues to flourish. Two examples include laboratory testing companies that are investing in improved diagnostic tests for more autoimmune antibodies and pharmaceutical companies pursuing more effective deliverance of therapies at the molecular level.

COVID-19 has galvanized the research world in gathering data to track the functioning of the immune system following infection by the virus, focusing in particular on the now common long term heightened immune response currently known as “long Covid” which may lead to more widespread autoimmune disease in the world’s population. GAI is in process of compiling a list of organizations with long Covid registries, to post and encourage participation.

In Conclusion

Despite the many discoveries that have been made, and the growing awareness of physicians of the presence and nature of autoimmune diseases, as well as some of their possible interrelationships, many forms of autoimmune disease remain difficult to diagnose, and effective treatment is often unavailable. AD symptoms are usually idiopathic; each person experiences variations in the extent and nature of their symptoms. Co-existences are poorly understood, with relatively few studies of only the most common AD’s having been completed. Existing study designs are very limited, and AD is extremely complex. In addition, we have a cultural norm of symptom dismissal or attribution to psychological illness in the absence of a diagnosis that can be made by laboratory testing. This has caused a great deal of harm to the many who are genuinely ill, trying to find help, and striving to cope.

Many of our best and brightest are devoting themselves to the field of AD, but it continues to grow in a piecemeal, fragmented manner because of its immense complexity and our limitations. New scientific knowledge is difficult to apply to the practice of medicine if it can be. In general, our dissemination of important information is not efficient. We are in a golden age of science, we have a physician community willing to learn, listen, and respond to the needs of their patients, and understanding of science is increasing in the general public.

We at GAI will continue to confront the complex problems of AD and provide the best and most comprehensive information for those seeking answers and validation. As the needs of our community evolve, GAI will remain active and committed to expanding our resources and the information we provide, as well as increasing our outreach through social media, networking, and educational events and programs.