Celiac Canada's 2024 - State of Celiac Survey Results

A report from

Celiac Canada’s 2024 State of Celiac Survey Results:

The rising challenges of living with celiac disease in Canada

February 2024

symptoms, especially neurological, becoming more common. Men and ethnic minorities are decidedly missing from the data. Naturally, the longer we are taking to diagnose people, the more complications will occur and create more cost and impact on the health system and quality of life.

People with celiac disease rely on gluten-free (GF) food. The prices of these foods, which are 150% - 500% higher than their gluten-containing counterparts have gone up further since the global pandemic. The cost of gluten-free food is making families change how they shop and eat. The current incremental medical tax claim regime offers little to no financial support especially for those with low incomes.

There is still no cure, and the only current treatment is the gluten-free diet (GFD). North America still lags Europe and Australia with access to safe food options in food service, especially in hospitals and long-term care facilities where people are most vulnerable. Precautionary statements (may contain) and creative language on labels only create confusion for consumers who need to trust labels to avoid terrible illness.

Underpinning these challenges is the lack of adequate clinical practice guidelines for physicians, awareness among Canadians, regulations to ensure human rights to safe food and research to support new treatments and management.

Our hope is this study will generate collaborative solutions, thoughtful discussions, and greater awareness in Canada and help us find, treat and cure celiac disease.

Melissa Secord Executive Director, Celiac Canada

Study Overview

It has been over 20 years since the first major population health survey of people in Canada living with celiac disease (CD).

Between September and December 2022, Celiac Canada issued an online health survey and 7,500 adults living in Canada with celiac disease or a gluten-related disorders responded. The survey was only offered in English.

Over 75 questions covered topics such as diagnosis pathways (e.g., symptoms before diagnosis, time from symptoms to diagnosis), management of celiac disease (e.g., cross-contamination in various social settings), gluten-free food availability and cost and psychosocial challenges of managing celiac disease.

Survey results show much work remains to be done and investments to be made in research to improve the lives of people living in Canada with celiac disease and those still to be diagnosed. This report presents key initial takeaways of people currently diagnosed.

Celiac Canada will be reporting additional findings from the survey including comparing results from the 2002 initial benchmark survey.

Celiac Disease has an Inequitable Impact on Canadians

Develop a national celiac disease strategy to reduce wait times and under-diagnosis rates particularly in at risk populations to improve health outcomes with greater investment in celiac disease research and awareness.

• Standardize use of the celiac disease ICD code to better track diagnosis of the disease in Canada.

• Recommend the development of Canadian-based clinical practice guidelines by the Canadian Association of Gastroenterology to improve diagnosis rates and standards of care.

• Add celiac disease to all provincial medical laboratory requisition forms to promote more serological screening of the disease where appropriate.

• Increase medical education for primary care physicians and other healthcare professionals to understand the current clinical presentations of the disease, including but not limited to, neurological and mental health presentations to reduce wait times, complications and unnecessary hospitalizations, doctor visits and testing.

• Improve funding availability for more endoscopy procedures to reduce wait times.

• Support a national awareness building campaign.

Affordability of the Gluten-free Diet

Secure a flat-rate federal income tax claim of at least $1,000 per adult and $600 per child to provide true financial relief of the cost burden of the gluten-free diet.

Access to Safe Food and the Burden of the Gluten-free Diet

Require all government funded health institutions (long term care, hospital, treatment centres, or assisted living) to provide adequately funded, safe gluten-free food for residents to meet human rights obligations, improve health outcomes and dignified care. Improvements could include, but not limited to, standards of care related to food service and changes to accreditation.

Develop regulations for allergen and gluten declarations in food service delivery (restaurants, facilities, airlines, etc.) such as on menus, similar to Italy, to protect all Canadians with medical dietary needs to improve consumer safety, choice and protection of rights.

Regulate precautionary food labelling to truly reflect food content and standardize the use of “gluten-free” on food labels.

Celiac Disease has an Inequitable Impact on Canadians

Modest improvement in delay to diagnosis since 2002 with greater disease awareness but not

Approximately two-thirds of respondents are diagnosed by abnormal serology (blood antibody tests) and intestinal biopsy; however, there has been an increase in the proportion of adults diagnosed by serology or symptoms alone, respectively, over time and varies by province.

Compared to the overall population in Canada, respondents tended to be women, older, Caucasian, have higher levels of education, and higher levels of household income.

Individuals with low incomes are more often diagnosed on serology alone compared to those with higher incomes. There is also an increase in the number of comorbidities per respondent as income levels decreased.

Given the low response rate by men and ethnic minorities in the survey, there is a continuing concern of potential underdiagnosis in these populations.

Six out of the twelve top symptoms and presentations of the disease reported are neurological in nature such as neuropathy, migraines, depression, and anxiety, and have become more common in recent years versus “classic” or traditional disease symptoms such as bloating, weight loss and diarrhea.

Long delays to diagnosis are associated with a perceived poor quality of life; however, there are notable improvements in quality of life after diagnosis, regardless of how long the prior delay.

Affordability of the Gluten-free Diet

Approximately one-third find the gluten-free diet somewhat difficult to follow – younger individuals, non-Caucasians, and those with the lowest income levels are at even greater risk of experiencing difficulties.

Most respondents find the gluten-free diet expensive, which also affects many in terms of what food they purchase. The cost burden increased for many during and after the COVID-pandemic.

Access to Safe Food

Many individuals report persistent symptoms despite following a gluten-free diet.

Negative emotions are frequently experienced when starting the gluten-free diet; these improve over time, but feelings of frustration and isolation are at least sometimes felt among over half of respondents.

There are many psychosocial burdens following a gluten-free diet that affect meaningful participation in social events, leading to additional stress in food preparation and interactions with friends, family and work colleagues, and cause frequent inconveniences that negatively impact quality of life.

Current food and nutritional product labelling regulations are helpful, but ambiguity remains with precautionary (may contain) statements; respondents feel companies use these statements as a way to protect themselves. Confusion also leads to respondents unnecessarily limiting food options that are actually safe to consume.

Individuals continue to be wary or fear options in restaurants with confusing and unregulated language such as ‘gluten-friendly’ or ‘gluten aware’.

Of those who have been in hospitals and/or retirement homes, obtaining gluten-free food is difficult at least some of the time for most (75.5%).

Challenges & Observations

Diagnostic challenges

• Long delays to diagnosis are likely to contribute to wasted healthcare resources, indirect costs on patients (e.g. missed work, productivity loss), and increase risk of developing other health conditions that can contribute to additional long-term healthcare costs. More research could be done to review such costs.

• The relatively high rate of ‘serologic only diagnosis’ (antibody blood test) and ‘symptom only diagnosis’ highlight the need to further educate healthcare practitioners and create Canadian-based clinical practice guidelines.

A tissue transglutaminase IgA (tTg IgA) serological (blood test) is commonly used to first screen for celiac disease in North America, and an intestinal biopsy is currently the gold standard to confirm diagnosis. In order for the tests to be accurate, an individual needs to be actively consuming gluten in their diet.

• An increase in diagnosis based on serology alone in recent years could indicate the challenges associated with waiting for an endoscopy procedure while still eating gluten. Individuals may not want to wait given high suspicion of celiac disease based on family history and/or symptoms – this issue warrants consideration when non-dietary therapies are introduced following clinical trials (i.e., will biopsy-confirmation be required for prescription coverage?). Results also show inconsistencies of diagnosis pathways by provinces. Other diseases and disorders should be ruled out before a gluten-free diet is introduced.

Why is a biopsy so important? A confirmed diagnosis of celiac disease means a lifelong gluten-free diet which is burdensome and expensive for patients to avoid further complications. A biopsy provides a baseline score of the current damage of the small intestine. Current research indicates that severity of symptoms does not equate to current level of damage to the small intestine. The baseline allows gastroenterologists to review improvements, or lack thereof, with the patient to then discuss future recommendations or examination including for refractory celiac disease (unresponsive to glutenfree diet). Given that the disease is also genetic, which can impact other family members, an accurate diagnosis is critical. There is also a risk for other comorbidities such as Type-1 diabetes and Graves’ disease to develop. Individuals who may wish to engage in clinical trials for future treatments also need a confirmed biopsy.

Disease awareness

• Greater awareness of celiac disease is needed among the public. More than one percent of Canadians are truly at-risk as anyone with the genetic markers and consumption of gluten is at-risk for developing CD. An additional two to five percent of the population is also at risk for other gluten disorders that are impacting their quality of life.

• Approximately 80% of respondents are women – while there is some evidence celiac disease is more common in females, the discrepancy is unlikely to be this unbalanced. It is worth considering whether there is a high rate of underdiagnosis in men in Canada.

• There is an imbalance in respondents socioeconomic status according to household income and higher education levels compared to the Canadian population. Therefore, feedback from people with lower incomes, including homeless populations, were not adequately captured in this electronic survey. Given the challenges of respondents on the cost of gluten-free food and accessibility, these could only be exacerbated among these underrepresented groups. More research is needed in this area.

• Caucasians are over-represented in this survey. Given that celiac disease affects one percent of the world’s population and one third of Canada’s population is ethnically diverse, there is more work needed to understand the lack of reach in these communities or potential underdiagnosis in Canada.

• The low number of respondents from the Northwest Territories (0.3%) and Nunavut (0.0%) make meaningful conclusions difficult. Another study could focus on these communities to determine quality of life. The low number of individuals identifying as First Nations or Inuit also make formal conclusions on their experience difficult.

Challenges & Observations

The cost of gluten-free food is 150% to 500% more expensive than a normal gluten-containing diet in Canada. Respondents report that the cost of gluten-free food has increased since the COVID-19 pandemic and is one of their top concerns. The current income tax reimbursement regime for gluten-free expenses is not used by most. The claim process is overly burdensome, the reimbursement rates average only $30 per adult, and is virtually inaccessible for people with low incomes, limited financial literacy, or without computer access.

Other treatments for chronic illness are at the very least often partially covered by health insurance (e.g., prescriptions); in addition, the disability tax credit can be claimed by many individuals with chronic disease and chronic symptoms but not those with celiac disease. Therefore, it is unreasonable to place the cost

Beyond its high cost, the gluten-free diet presents many challenges to those living with celiac disease. These difficulties are intensified by factors such as gender, age, household size, geographic location (e.g., rural), employment environments, access to dietary education, persistence of symptoms, and how well the diet is understood by the individual and family or friends. It is therefore important in the diagnosis process and follow-up care that these factors are considered to ensure optimal management of the disease and adherence to treatment (including education and information on food labelling guidelines).

The diet can be difficult to follow and learn in the initial years of the disease. Patients who are turning to primary care professionals, such as their family doctor and dietitian, are experiencing challenges due to a lack of education on celiac disease and the gluten-free diet. Celiac Canada is seen as a leading resource over all other information channels. More people are turning to naturopaths for information.

• While improvements have been made in access to quality gluten-free food options thanks to innovations in food production and market growth, access to safe food is a struggle and a point of anxiety when individuals are out of the safety of their homes. When an individual is unable to self-advocate such as a senior in a longterm care home or patient in a hospital setting, or newcomers with language barriers, short and long-term health is at risk of further complications. According to the principles of the UN International Human Rights, the “aim is to guarantee the availability of food in quantity and quality sufficient to satisfy the dietary needs of individuals; physical and economic accessibility for everyone, including vulnerable groups, to adequate food, free from unsafe substances and acceptable within a given culture; or the means of its procurement.”

The Gluten-free Diet Is Not Enough. The Need For A Cure.

Respondents show that the gluten-free diet is not enough. Many are still showing unresolved symptoms. Those individuals with depression and anxiety show lower rates of recovery of only 14.5% and 22.8% respectively after diagnosis and a gluten-free diet. There is no cure for celiac disease and no pharmacologic treatments. Commercial entities are conducting some clinical trials but there is almost no government support for celiac disease research in Canada. Celiac Canada continues to be the largest single organization funding Canadian research into celiac disease. However, the CCA is limited to disbursing a maximum of only $25,000 per year.

General Information & Respondent Characteristics

Diagnosis

Diagnosis basis

Notable Province/territories Variances

Insights:

The relatively high rate of ‘serologic only diagnosis’ (antibody blood test) and ‘symptom only diagnosis’ highlight the need to further educate healthcare practitioners and create Canadian-based clinical practice guidelines.

No major difference according to level of education, gender, or urban/rural status.

• Saskatchewan has lowest proportion with biopsy (just over half)

• Newfoundland & Labrador and Quebec have highest proportion with biopsy (Over 70%)

• Prince Edward Island has highest proportion based on symptoms only (almost 30%)

Comorbidities

1113 (16.8%) Thyroid disease

693 (10.5%) Arthritis

319 (4.8%) Osteoporosis*

263 (4.4%) Anxiety*

236 (3.6%)

Depression* 223 (3.5%)

Fibromyalgia* 139 (2.1%)

Migraine* 129 (2.0%)

Type 1 diabetes 122 (1.8%)

Irritable bowel syndrome 122 (1.8%)

107 (1.6%)

Sjogren’s syndrome

There is a decrease in biopsy-confirmed diagnoses as household income levels decreased; there is also an increase in the number of comorbidities per respondent as income levels decreased.

* is not explicitly asked - from ‘other’ responses

The introduction of a strict gluten-free diet can dramatically slow the damage and heal the intestinal damage over a few years. This recovery allows individuals to regain better health.

Clinical Features

Insights:

A significant amount of respondents experience long delays to diagnosis.

Notable Gender Variances:

Approximately 40% of women report a delay of 10 years or more.

• 40% for non-binary/other

• 25% for men

I did not have any symptoms (asymptomatic)

Less than six months

Six months to less than two years

Two years to less than five years

Five years to less than 10 years

10 years to less than 20 years

More than 20 years

Quality of Life After Diagnosis

I did not have any symptoms (asymptomatic)

Less than six months

Six months to less than two years

Two years to less than five years

Five years to less than 10 years

10 years to less than 20 years

More than 20 years

Insights: The longer the delay to diagnosis, the worse the perceived quality of life. Respondents report general improvements in quality of life regardless of how long of a delay after diagnosis and on a gluten-free diet.

Symptom Recovery

Most common symptoms before diagnosis

Bloating

Abdominal Pain/ Discomfort

Gas/Flatulance

Extreme Weakness/ Tiredness

Loose Stool

• Bloating (62.7%)

• Only 41.9% report recovery rate

• Abdominal pain/discomfort (61.9%)

• Only 46.9% report recovery

• Gas/flatulence (59.3%)

• Only 36.7% report recovery

• Extreme weakness/tiredness (53.4%)

• Only 39.9% report recovery

• Loose stool (51.5%)

• Only 44.6% report recovery

Symptoms reported before diagnosis

Recovery reported after diagnosis

Symptoms with lowest rates of recovery after diagnosis

Anxiety

Easy Bruising

Insomnia

Bone/joint pain

Depression

• Anxiety (42.5%)

• Only 14.5% report recovery

• Easy bruising (30.6%)

• Only 17.2% report recovery

• Insomnia (31.9%)

• Only 19.7% report recovery

• Bone/joint pain (37.7%)

• Only 22.7% report recovery

• Depression (32.3%)

• Only 22.8% report recovery

Symptoms reported before diagnosis

Recovery reported after diagnosis

Gluten reaction

• Most react to consuming gluten within 3 hours (57.6%) or 12 hours (30.2%)

• Most experience a reaction lasting 3 to 24 hours (35.2%) or 1 to 3 days (36.3%)

• More than half experience a reaction of at least one day or longer (57.1%)

• No major differences according to time since diagnosis

Insights:

Celiac disease is often misunderstood by the public on the severity and duration of accidental gluten contamination. The survey demonstrates the daily challenges for people with celiac disease where most individuals are sick for more than one day to recover after gluten exposure.

Management & Dietary Practices

Consumption of gluten

• Most respondents (>90%) recognize the gluten-free diet as being important to control their celiac disease; similarly, most feel in good control of the gluten-free diet (90.6%) this is despite unresolved symptoms.

• Just over half also see the diet as important to improve their overall well-being and prevent long-term complications.

• No major differences across gender, level of education, household income, and urban/rural status.

• Most (75.1%) find eating away from home difficult due to limited safe choices.

• Most avoid gluten in their diet completely (i.e., any consumption is unintentional), and it is rare to intentionally consume gluten (~5%).

Sources and quality of information regarding the gluten-free diet:

• Most (~75%) consult their family physician after diagnosis, and just under two-thirds see a gastroenterologist.

• As a useful resource for the gluten-free diet, family doctors are rated lowest (Only ~30% find them very good or excellent).

• Almost half see gastroenterologists as being very good or excellent regarding the gluten-free diet, and 60% note their usefulness at the same rate for registered dietitians.

• The most useful resources for the gluten-free diet are Celiac Canada, local celiac chapters, or another person with celiac disease.

• Although the internet is one of the most used resources for information on the gluten-free diet just over half feel this is a very good or excellent source of utility.

Impact of Following Gluten-Free Diet

Emotions

• Approximately half feel frustrated and/or overwhelmed often or very often when beginning the gluten-free diet. Many also feel isolated, anxious, sad, and/or angry often or very often.

• Negative emotions are experienced less frequently over time after diagnosis.

• However, over half continue to feel frustrated and/ or isolated at least sometimes.

• The magnitude of change also varies according to time since diagnosis (i.e., more recent diagnosed still experiencing negative emotions more frequently than those diagnosed further back)

Work/school/university

• Many employ strategies often or very often such as having snacks on hand just in case (80.7%), offering to bring gluten-free food at food events (70.8%), and reminding others about gluten-free needs at food events (59.3%).

• However, many feel bad when others prepare gluten-free foods that are not safe (88.8%), find business/school lunches very stressful (81.2%), find it difficult being spotlighted as having a problem (73.2%), are hurt when others are indifferent to their needs (67.9%), and try to avoid food events (58.7%), at least sometimes.

• Most do not have several gluten-free options in their cafeteria (74.4%).

Difficulty of gluten-free diet

• About one-third of respondents find following the gluten-free diet to be at least somewhat difficult.

• Highest difficulty among the youngest respondents, non-Caucasians, and those with the lowest levels of household income, respectively.

• A little over half are referred to a registered dietitian at diagnosis, although this does not appear to affect the level of difficulty experienced in following the gluten-free diet.

Family and friends

• Most feel that their family (77.2%) and to a lesser extent, friends (62.6%) have a good understanding of their needs often or very often.

• Most (70.4%) do not like others feeling sorry for them often or very often.

• At least sometimes, most individuals feel they are missing out on social events (69.8%), avoid social events involving food (68.0%), feel neglected due to gluten-free needs (66.7%), find it hard to ask others to accommodate their diet (59.9%), and feel burdensome due to gluten-free needs (56.9%).

• To stay safe, many eat ahead of events (53.2%), bring their own food (50.8%), or take charge of meals for everyone (39.0%) often or very often.

Cost of gluten-free diet

• Three-quarters find the gluten-free diet to be expensive.

• Over half (52.1%) report this limits the food they buy often or very often.

• Only 1 in 5 have claimed the incremental cost of the gluten-free diet on their income tax.

Food preparation

• Many prepare gluten-free food for the whole household often or very often (68.0%).

• This also translates to having to cook more often than before (48.2%)

• Many feel there are limited choices for packed lunches (64.7%), it is difficult to use gluten-free flour (57.8%), and preparing meals is more difficult than before (49.9%), at least sometimes.

Restaurants

• Most respondents have limited restaurant choices often or very often (80.2%).

• Within restaurants, there are also challenges often or very often with limited menu options in fast food settings (86.6%) and elsewhere (65.5%)

• Many employ strategies often/very often such as using the internet to find restaurants (78.4%), enquiring about gluten content on menu items (73.8%), or calling ahead to understand gluten-free options (48.0%).

• At least sometimes, there is worry the chef does not understand safe food preparation (88.2%), resentment towards being expected to choose the restaurant (71.6%), and an inability to eat at restaurants due to potential gluten contamination (67.3%).

• There is often/very often less trust when an item is labelled ‘gluten-friendly’ (21.8%) compared to ‘gluten-free’ (40.9%).

Traveling

• Many respondents often or very often are sad about the inability to enjoy cultural foods (68.4%), feel anxious about traveling (63.6%), and worry they cannot find gluten-free food (63.1%).

• Most research restaurants prior to the trip (71.6%), take translated information about the gluten-free diet (48.5%) often or very often.

• At least sometimes, respondents find it difficult to find safe restaurants (90.6%), understand labels in a different language (89.4%), carry their own glutenfree foods (79.4%), restrict their travel due to the gluten-free diet (62.7%), and are embarrassed to ask for gluten-free food everywhere (59.0%).

• Only 30.1% find traveling to be enjoyable often or very often.

Precautionary Labelling

79.4%

of respondents never consume products labelled with “may contain traces of wheat”

79.3%

of respondents feel that precautionary statements should always be mandatory

77.2%

of respondents never consume products labelled with “manufactured on same equipment as wheat”

76.6%

of respondents always feel the precautionary statement should only be present if there is a real risk

77.2%

of respondents never consume products labelled with “may contain wheat”

57.8%

of respondents find the precautionary statements always helpful

87.8%

of respondents feel that precautionary statements are used to protect the companies at least some of the time

71.0%

of respondents feel that precautionary statements limited options unnecessarily at least some of the time

Only one-quarter always find the current precautionary statements easy to understand (59.4% sometimes)

Family Members & Living Situation

Almost half have at least one family member who also has celiac disease (44.7%).

• Of these (76.0%) have a first-degree relative, 40.2% have a second-degree relative, and 23.5% have a third-degree relative.

• 70% of the ones diagnosed have a relative with symptoms associated with celiac disease.

14.1% of respondents live alone

76.7%

Three-quarters of respondents (76.7%) live with two to four people (including themselves).

Of those living with at least one other person, most do not have any children aged zero to five years old (90.0%), and approximately one-quarter (26.6%) have at least one child aged six to 18 years old. A similar amount (26.8%) have at least one dependent over the age of 18 in their household.

1 in 10

35.6%

95% of those who provided the information, the majority (95%) have English as the primary language in their home.

Almost 1 in 10 respondents state the gluten-free diet limits some of their religious practices often or very often.

Over one-third (35.6%) feel that the gluten-free diet affects their relationships, at least some of the time.

Of those who have been in hospitals and/or retirement homes, obtaining gluten-free food is difficult at least some of the time for most (75.5%).

Cross-Contamination

Approximately 15% of respondents find the gluten-free diet challenging due to cross-contamination at home.

• This is slightly higher for non-Caucasians (22.2%), for those living in rural areas (20.2%), and younger individuals (median age with cross-contamination at home = 50 years old vs without = 57 years old).

• Younger individuals are more likely to report cross-contamination across various contexts (restaurants, family/friends, work, social events), possibly due to lifestyle of working, social events, etc.

Insight:

Cross Contamination Rates Based On Household Size

Live alone

Two person household

Three person household

Four person household

Five person household

More than five person household

As expected, cross-contamination increases the larger the household with more food preparation, ingredient handling and pressures on cleaning surfaces, utensils and shared appliances.

COVID-19 Pandemic

• Over two-thirds tested positive for COVID-19 at least once (38.3%).

• Vast majority occurred after celiac disease diagnosis (93.8%).

• Less than 2% required hospitalization, of which only 10% were admitted to the ICU.

• Over three-quarters received at least one vaccination for COVID-19, with a greater likelihood among older age groups (mean age of 54.2 years vaccinated versus 45.7 years not vaccinated).

• Delays from symptom onset to diagnosis do not appear to change among those diagnosed during the pandemic compared to those diagnosed before.

• There is no indication the pandemic made it more challenging to follow the gluten-free diet (81.8%), although almost one-third (32.2%) found it harder to obtain gluten-free food at some point during the pandemic.

• This was slightly harder among those in rural areas (38.0%) compared to those in city centres (28.3%)

• Almost three-quarters (73.4%) experienced an increase in the cost of gluten-free food during the pandemic.

• Some are adjusting finances in other areas to afford gluten-free food (28.5%), changing the type of food they purchase (19.3%). Almost one-third (31.1%) do not find the elevated cost affect their personal situation.

Increased cost of gluten-free food affect respondents across different household incomes.

Yes, but minor No

Yes, adjusted finances elsewhere

Yes, a ected food purchased

Yes, accessed food bank

Insight:

Notable affect across income levels, household incomes of $100,000 and under are adjusting their finances elsewhere, reviewing the food they purchase, and for those under $50,000 some access a food bank.

State of Celiac Disease Across Time

15+ years since diagnosis

Among those diagnosed 15+ years ago, 42.8% experienced delays from symptom onset to diagnosis of 10+ years

Diagnosed within two years

Among those diagnosed within the last two years, 30.5% experienced delays from symptom onset to diagnosis of 10+ years

Insight:

• People who are diagnosed more recently, find gluten-free diet most difficult (i.e. difficulty subsides over time).

• More respondents are reporting ‘atypical’ symptoms in more recent time period.

• Among those diagnosed in the last two years, the most atypical symptoms, especially neurological, are presenting: extreme weakness/tiredness (62.0%), anxiety (58.9%), brain fog (57.4%), mood swings/irritability (56.8%), headaches/migraines (52.6%), iron deficiency (51.1%)

• Some of these symptoms are common among those >25 years ago, except anxiety (34.5%), brain fog (30.9%), mood swings/irritability (42.5%), headaches/migraines (34.8%) have increased substantially.

• Some ‘typical gut” symptoms are less commonly reported now:

• 50.6% with diarrhea (last two years) vs. 71.5% (>25 years ago)

• 32.4% with large, foul-smelling stool (last two years) vs. 59.0% (>25 years ago)

In more recent years, there has been modest improvement in the length of time it takes someone to get diagnosed (from symptom onset to diagnosis). However, long delays to diagnosis remain a common experience for many newly diagnosed individuals.

• Diagnosis based on serology only is increasing compared to 2002 (~5% for those >25 years ago compared to almost 30% diagnosed within the last two years)

• Less respondents now consult a gastroenterologist before diagnosis compared to 2002.

• Diagnosed in last two years (41.5%) vs. those diagnosed >25 years ago (60.0%)

• People consulting a naturopath has gone up for those diagnosed in last two years (12.2%) compared to those >25 years ago (4.5%)

• The opposite is true for an internist: 3.7% in last two years compared to 11.5% for those diagnosed >25 years ago

• Overall, few consult other specialties other than family physician/gastroenterologist (i.e., <10%)

• Resolution of symptoms is more common among those diagnosed earlier (i.e., on gluten-free diet for longer)

• Those diagnosed more recently are less likely to use local celiac chapter, newspapers/magazines, and books for gluten-free diet information.

• Increase in non-Caucasian diagnoses over time.

• <25 years = 2%

• <2 years = 8%

Delay to diagnosis <10 years (or asymptomatic)

Delay to diagnosis 10+ years

Acknowledgments

The State of Celiac Disease in Canada Health Survey has been collected and issued by Celiac Canada (formerly Canadian Celiac Association) based in Mississauga, Ontario, Canada. Since 1973, Celiac Canada (CCA) is the only national charity advocating for people with celiac disease and gluten disorders. CCA is a leader in providing evidence-based education, research, programs and services. Celiac Canada is the largest single granting organization of celiac disease research in the country.

Celiac Canada would like to thank the following individuals for contributing to this study:

• Dr. Don Duerksen, University of Manitoba, Celiac Canada Professional Advisory Council Chair and Lead Researcher

• Caleigh McAulay, RD – Health Promotion Manager and Project Lead

• James King, MSc for data analysis

• Melissa Secord, Executive Director, Celiac Canada

• Shelley Case, RD

• Dr. Justine Turner, Alberta Health Sciences

• Dr. Olga Pulido

• Nicole Byrom, RD

• Dr. Lucia Perez Repetto

We are grateful to individuals and corporations who have contributed to research and extra special thanks to Takeda Pharmaceuticals, Ottawa Chapter of Celiac Canada for unrestricted grants specifically to support this study and its public dissemination.

Release date: February 27th, 2024

Celiac Canada

1450 Meyerside Dr. Suite 503 Mississauga, ON. Canada. L5T 2N5 www.celiac.ca

Registered Charity: 106844244RR0001