We are excited to highlight the recent research work of Judah Baratz, a dedicated volunteer with Celiac Canada’s Newly Diagnosed Program. As part of a project at a local family health centre, Judah explored how family physicians support patients following a celiac disease diagnosis. Below, we share some of the key findings from Judah’s work.
Family physicians often play a crucial role in recognizing the early signs and symptoms of celiac disease and can be instrumental in facilitating a timely diagnosis (1). While some patients may be referred to and managed by a gastroenterologist, many will continue to receive follow-up care and ongoing support by their family doctor (2,3).
Given this ongoing relationship, it is not surprising that many patients turn to their family physicians for guidance after diagnosis. However, in our latest State of Celiac Canada report, we found that while most respondents (75%) consulted their family physician, many did not find them to be helpful resources of information on the gluten-free diet (4).
To explore this further, Judah conducted a research project that surveyed 22 family physicians in the Greater Toronto Area to examine their current post-diagnosis practices, as well as their observations on the challenges patients face and the resources needed to better support them.
Key Findings
The study found that while many family physicians offer support to patients after a celiac disease diagnosis, most of the guidance they give is verbal (63.6%) or through online resources (54.5%). Alarmingly, about 23% reported offering no printed information, verbal advice, or online resources.
Majority of the doctors (90.9%) reported that most newly diagnosed patients asked for information on which foods to avoid, and how to manage symptoms and long-term risks. However, only one-third of physicians reported patients were asking for information about how to prevent cross-contamination and label reading.
While it appears that most of the focus for newly diagnosed patients is on the gluten-free diet, physicians reported that patients appeared to be the least prepared to manage the emotional and mental health adjustments of a new diagnosis, highlighting the mental toll celiac disease and the gluten-free diet can have.
3. Doctors support the idea of a “post-diagnosis toolkit”
Physicians strongly supported the idea of having a standardized toolkit for newly diagnosed patients with the most requested tools being a label-reading guide (81.8%) and a myth-busting/FAQ resources (81.8%).
4. Doctors acknowledge that some groups, like parents with children diagnosed with celiac disease and teens, need extra support
Physicians ranked parents of children with celiac, and teens and young adults, as the most vulnerable after diagnosis. Social pressures and the challenges of growing independence can make managing celiac disease especially difficult.
What this means for you
This research highlights a critical but often overlooked part of the celiac disease journey: what happens after you are diagnosed. While family physicians may be key to getting an initial diagnosis, many may lack the tools and resources to fully support patients through the emotional, social, and dietary needs that follow.
Celiac Canada offers several resources to help fill this gap:
Navigating a celiac disease diagnosis can feel overwhelming, but you don’t have to do it alone. Whether you are newly diagnosed or a few years into your gluten-free diet, support is available and growing! Research like Judah’s is helping to identify gaps and move the health care system forward. In the meantime, Celiac Canada is here to guide you and connect you with important resources.
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