1st Documented Accurate Depiction of Coeliac Disease
In the 2nd century AD, Aretaeus of Cappadocia, provided the earliest known accurate depiction of coeliac disease. He documented the distinctive stool, observed a higher prevalence of the illness in women than in men, and recognized that children could also be affected.
Dutch physician chronicled first adverse effect (or "symptom") caused by coeliac disease
In 1669, Vincent Ketelaer, a Dutch physician, chronicled a diarrhoeal condition in which the fecal matter was so copious that "several basins or pots scarcely hold these accumulations."
1st Probable Mention of Coeliac Disease in Print
It is probable that both Ketelaer and John Bricknell, who mentioned patients with the "white flux" in a book he published in 1737, were describing coeliac disease.
Celiac Disease Identified
Samuel Gee writes the first modern description of celiac disease and hypothesizes that it can be controlled through diet.
According to the English physician Samuel Gee, individuals with "celiac affection" can be healed by modifying their diet. Gee initially introduced the contemporary interpretation of celiac disease during a speech at the Hospital for Sick Children in London. He proposed that the disorder could be addressed through dietary adjustments, stating his belief that if a cure existed, it would be through nutrition. Gee experimented with various dietary regimens, including a Dutch mussel-based diet, with his patients, but he was unable to identify the precise food that triggered the disease during his lifetime.Source
The Banana Diet Begins
Sidney Haas, an American pediatrician, introduced the "banana diet" as a cure for celiac disease. He observed significant improvements in children's conditions after placing them on a high-banana, low-starch diet. Before the advent of the banana diet, over 30% of children with celiac disease perished. However, the gluten-free and calorie-dense nature of the banana diet facilitated the healing of children's villi, and many lives were saved. Parents from all over the United States flocked to Dr. Haas for treatment of their children with celiac disease. The banana diet remained in use until the early 1950s. Despite its success, the banana diet had some drawbacks, as many people mistakenly assumed that once children's villi had healed, they could revert to a regular gluten-containing diet, which could cause significant harm to the villi and lead to other severe side effects.
Following WWII, the role of gluten in wheat and rye related to Celiac disease is identified
In the 1940s, Willem Karel Dicke, a Dutch pediatrician, proposed the theory that wheat protein was responsible for triggering celiac disease. Dr. Dicke made this connection during World War II when bread became scarce in the Netherlands. He observed that the mortality rate for celiac disease plummeted to zero in his hospital during this period. As a result, he developed a diet free of wheat to treat patients with celiac disease.
In 1952, a medical team from England published their research findings on the effects of wheat and rye flour on patients with celiac disease. They discovered that removing these flours from their diets led to significant improvements in their condition. This study ultimately led to the identification of gluten, the protein present in wheat, barley, and rye, as the primary trigger for celiac disease.Source
Jejunal biopsy apparatus and capture identifies a pattern of damage to the intestine
In 1956, Margot Shiner, a German-British gastroenterologist and medical researcher, developed a new technique for intestinal biopsy called the jejunal biopsy instrument. This procedure enabled the diagnosis of celiac disease and other gastrointestinal disorders and is credited with launching the specialty of modern pediatric gastroenterology.Source
Genetic Markers are Discovered
In the early 1970s, genetic markers for celiac disease were discovered. While the specific gene or genes responsible for the disorder have not been fully identified, ongoing research aims to identify them, with the goal of developing new treatments that do not solely rely on a gluten-free diet.
During the 1970s to 1990s, researchers made significant strides in recognizing celiac disease as an autoimmune disorder and pinpointing specific genes associated with it. In the 1970s, the HLA-DQ2 gene was linked to celiac disease and dermatitis herpetiformis.
Celiac Canada is Founded
Celiac Canada has a rich history, having been established as the inaugural patient advocacy group dedicated to driving diagnosis and facilitating access to gluten-free food. Originally known as the Canadian Celiac Association, the organization owes its inception to the tireless efforts of two women who hosted the first-ever celiac patient group meeting in North America at the Kitchener-Waterloo hospital on a dark and stormy night in February. The Kauffman Foundation provided crucial financial support that allowed the organization to take its first steps towards fulfilling its mission.
The Sick Kids Hospital and Weston Bakery were instrumental in developing a bread made with wheat starch, which was kept in a freezer in the dispensary of KW hospital and sold at cost. The CCA also imported pasta and bread mixes to support its members. Additionally, the organization created print materials, including a national handbook, to educate and empower its members.
In 1979, the first conference was held in Kitchener Waterloo, which marked a significant turning point for individuals with celiac disease. This event provided a platform for members to connect and share their experiences, while also paving the way for future advocacy and awareness-raising efforts. Today, Celiac Canada continues to build on its legacy and remains a driving force in the fight against celiac disease.
Key people at this time were: Kay Ernst, Nora Reich, Founders; Frances Murphy, President ’79-‘81; Dr. J.A. Campbell; Major Mike Henderson; Carol Lindsay, President ’73-‘75.
By the 1980s, the connection between celiac disease and other autoimmune disorders, such as Type 1 Diabetes, was acknowledged by the medical community.
Growth & Expansion
During the decade spanning from 1983 to 1993, the Canadian Celiac Association experienced remarkable growth, with 16 chapters registered across the country. This remarkable expansion was spurred on by an article in Chatelaine magazine, which helped galvanize support for the organization's vital mission.
In response to this rapid growth, the CCA opened its first national office and hired its first staff member. Annual conferences, hosted by various chapters, became a beloved tradition, offering a forum for members to forge friendships, exchange vital information, and indulge in a bounty of delicious gluten-free fare.
Despite these positive developments, the quality of gluten-free food remained a source of frustration for many, and concerns about the gluten-free status of various grains like millet and sorghum left many feeling uncertain. Undeterred, the organization continued to push forward, creating its first-ever National Celiac Survey and establishing the J.A. Campbell research fund, which aimed to support critical research into celiac disease.
The organization also made a significant visual statement by adopting the "crossed grain" symbol as its official logo, a powerful symbol of hope and perseverance that remains synonymous with the organization to this day. With these innovative initiatives in place, the Canadian Celiac Association cemented its place as a vital and influential advocate for individuals living with celiac disease.
Key people at this time were: Rosie Wartecker, first Executive Director, Karl Bene, Health Canada liaison for CCA, Marion Zarkadas, Shelley Case.
In the early 1990s, celiac disease was officially classified as an autoimmune disorder, and the specific genes involved in the disease were identified as either HLA-DQ2 or HLA-DQ8. Additionally, in 1997, the role of the tissue transglutaminase antigen (tTG) in celiac disease was discovered.
During the period spanning 1993-2003, we succeeded in establishing ourselves as the preeminent authority on celiac disease and the gluten-free diet, gaining widespread recognition for our unwavering commitment to these causes. Under the guidance of our esteemed Professional Advisory Board, we took several groundbreaking initiatives, including the launch of the first-ever Canadian Celiac Health Survey, as well as the publication of the "Pocket Dictionary" in both English and French.
Furthermore, we established a research fund in honor of the eminent Dr. J.A. Campbell and awarded our inaugural research grant, demonstrating our steadfast commitment to advancing the scientific understanding of celiac disease. Additionally, our tireless volunteers were honored with Queen's Jubilee Medals, and we provided peer counseling training to chapter volunteers across the country.
During this period, we also witnessed a significant expansion of gluten-free options, as gluten-free oats became widely available and a diverse range of grains beyond rice entered the market. Our efforts in this domain were further bolstered by the establishment of the first-ever Professional Advisory Board, spearheaded by the illustrious Dr. George Warren, and the publication of the Canadian Celiac Health survey results.
To better equip healthcare professionals, we developed a resource kit tailored specifically for dietitians, thereby increasing awareness and understanding of celiac disease in the broader medical community.
Key people at this time were: Judi Farrell, Executive Director, Shelley Case, Marion Zarkadas, Dr. Vern Burrows.
Over the course of this decade, Celiac Canada achieved several noteworthy milestones that cemented its reputation as a trailblazer in the field. The organization took the lead in spearheading several significant scientific publications, advocating for the cause with federal government entities, and facilitating major strides in the availability of safe gluten-free food. Notably, Celiac Canada worked directly with Canada's first grower of gluten-free oats and played a pivotal role in developing the Gluten-Free Certification Program.
Thanks to these efforts, Celiac Canada was recognized as a credible authority and invited to share its concerns with esteemed organizations such as the CRA, Health Canada, and the NIH Consensus Conference on Celiac Disease in the US. During this same period, gluten-free oats were officially deemed safe and became widely available in Canada. Additionally, gluten-free beer and pizza delivery options became readily accessible, marking a significant turning point for individuals with celiac disease.
Celiac Canada's contribution to the field was further amplified by the publication of a nationwide survey on life with celiac disease, which led to several publications in prominent scientific journals. Additionally, the organization published "The Oral Manifestations of Celiac Disease," a seminal work that illuminated the complex interplay between oral health and celiac disease.
Recognizing the power of social media, Celiac Canada also established a strong online presence, allowing the organization to connect with a wider audience and extend its reach beyond traditional channels.
Key people during this time were: Marion Zarkadas, RD, Professional Advisory Board; Shelley Case RD, Professional Advisory Board; Dr. Vern Burrows, Professional Advisory Board; Jim McCarthy, Executive Director; Sue Newell; Dr. Samuel Godefroy, Health Canada; Dr. Olga Pulido, Health Canada.
First potential drugs for celiac disease begin the clinical trial process.
Celiac Canada establishes Food Labelling Guidelines in partnership with Health Canada.
GFCP grows exponentially (more than 6000 products) and becomes international.
Resilience and Renewal
During this period, Celiac Canada faced grave financial constraints, prompting the organization, already mindful of its expenses, to adopt a particularly parsimonious approach. This involved reducing staff, curtailing face-to-face board meetings, and learning to make do with less. Volunteers Sue Newell and Janet Dalziel valiantly stepped in, overseeing the office's operations for over half a year, ably assisted by Treasurer Leo Turner, President of the Board Anne Wraggett, and Board Director Mark Johnson. As membership dwindled and local chapters shrank, the organization's Facebook support group exploded in popularity, evolving into a novel format, overseen by Celiac Canada's formal moderators, to provide timely and accurate information as well as peer support.
After four years without an executive director, the national board opted to bring someone onboard, driven by the desire to expand the organization and transition to a 100% charity status. The ultimate goal was to empower every individual with celiac disease to obtain a proper diagnosis and gain the tools necessary to manage their condition effectively.
Key People during this time: David Congram, Board Director; Melissa Secord, Executive Director, Nicole Byrom, RD; Lynda Marie Neilson, Volunteer; Julie Greene Board Director/Staff; Mark Johnson, Board Director, Volunteer; Dr. Moshin Rashid.
Food Labelling Guidelines come into effect - foods must now show gluten on the label.
Celiac Canada worked with health canada to have safe oats labelled as gluten-free and Celiac Canada releases a position statement on oats.
The pocket dictionary came out as an app.
The Professional Advisory Committee publishes authoritative statements on: early introduction of gluten for infants,safety of alcohol,oats,gluten in medications;lotions and cosmetics; and, how to read food labels.
CCA completes the Agri-foods Study #1 in partnership with Agriculture Canada. Many years of work with Agriculture Canada comes to fruition with new standards for safe production of GF grains and pulses.
The Save Me for Gluten Free Food Bank Program is established: Source
CCA transitions from Membership based model to a charity.
Beer Labelling Laws in Canada are now in effect.
A large research study “State of Celiac Disease in Canada” is launched.
Health Canada adds new mandatory gluten warnings to natural health products.
Celiac Canada continues to advocate for consistent use of precautionary labels, gluten in medications and tax reform.
Ontario blood test coverage is made permanent, thanks to 10 years of advocacy from the CCA and its partners.
Name change to Celiac Canada.
Sign up for ongoing information from Celiac Canada.