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Celiac Disease Research

Your source for world-class, reliable research.

Celiac disease becomes current in the medical world

April 11th, 2024. For the first time, Gastroenterology Magazine committed its full May issue to celiac disease, commemorating celiac disease awareness month in May. A sign that the medical community is taking the disease seriously. 

Dr Elena Verdu from the Farncombe Institute adult celiac disease clinic at McMaster University, and Dr Peter Green from the celiac disease centre at Colombia University edited the magazine and wrote the editorial. 

The magazine deals with subjects around who to test, different tests, the community health burden as the number of people with celiac disease goes up, gluten consumption symptoms, non-responsive to the gluten-free diet and more. 

State of Celiac Disease in Canada: Underdiagnosed, unaffordable, unsafe foods: Survey

20 years after first survey, little has changed for hundreds of thousands of Canadians living with celiac disease

 

Toronto, February 28th, 2024. Twenty years after the first comprehensive survey of Canadians living with celiac disease, new results show the condition remains largely underdiagnosed, the gluten-free diet is often unaffordable, and many risk being exposed to unsafe food.

“Sadly, the biggest challenges haven’t improved in twenty years – like getting people with celiac disease properly diagnosed early, and ensuring they’re able to afford gluten-free foods that won’t do them harm,” explains Melissa Secord, National Executive Director of Celiac Canada, which funded the survey “State of Celiac Disease in Canada: 20 Years Later.”

“Celiac disease is a common genetic disorder that affects about one percent of the world’s population, but up to 80% still don’t even know they have it. So, they’re living with painful, life-disrupting symptoms and unwittingly causing themselves harm. For those who have been diagnosed, the unaffordable cost of gluten-free foods often means having to skip meals, change the food they purchase or make sacrifices in other areas of their spending.”

Celiac disease is an auto-immune condition triggered by ingesting gluten (a naturally occurring protein) in grains such as wheat, rye and barley. The body attacks itself, damaging the small intestine and resulting in malabsorption of vital nutrients. Damage can lead to a variety of over 260 possible gastrointestinal and extraintestinal symptoms; the top ‘non-gut’ symptoms are now neurological such as anxiety (58.9%), brain fog (57.4%) and headaches and migraines (52.6%). Long delays in diagnosis can cause co-morbidities and early death from complications.

Celiac Canada surveyed 7,500 Canadians with celiac disease on topics like what symptoms they experience, how long they went before being diagnosed, and how they manage living with the disease (eating challenges in social settings, the availability and cost of gluten-free food, and the psycho-social challenges of managing celiac disease).

Among the key findings of the survey:

• DELAYS IN DIAGNOSIS: While general awareness of gluten-free diets as a fad has risen in the last 20 years, there has been no significant reduction in the amount of time it can take for people with symptoms to be properly diagnosed – as long as 10 years, in most cases.

• CHANGING SYMPTOMS: 4 out of the 10 top symptoms in more recent years are neurological (anxiety, brain fog, mood swings/irritability, headaches/ migraines) versus more traditional celiac disease symptoms like bloating, gas and diarrhea.

• AFFORDABILITY: Most respondents (75%) say the cost of the gluten-free is their top concern, which impacts the dietary choices they make. Gluten-free foods can cost from 150% to 500% more than their conventional counterparts, representing an average additional cost of $1,000 per year per adult. Incremental tax relief offered by the federal government is insufficient and complicated– only 20% of respondents have taken advantage of it – and people in the lowest income categories (those who need help the most) don’t even qualify.

• RISK OF UNSAFE FOODS: Three-quarters of respondents (75.5%) who have been in hospitals or care homes say it’s difficult getting gluten-free food in those settings.

• MENTAL HEALTH: More than half reported feelings of frustration and isolation from having to follow a gluten-free diet. They also say it affects their participation in social events and causes stress in food preparation and interactions with friends, family and work colleagues. Respondents continue to be wary of or fear options in restaurants using confusing and unregulated language such as “gluten-friendly” or “gluten aware” menu items.

What can be done to help Canadians living with celiac disease?

1. MORE DIAGNOSIS, FASTER
• Have all provinces add blood tests for celiac disease to the standard requisition used by family doctors.

• Develop and implement new guidelines to improve diagnosis rates and standards of care – to put celiac disease on the radar of front-line family doctors and healthcare professionals.

• Help healthcare professionals better recognize the increasing neurological and mental health signs of celiac disease (neuropathy, migraines, depression, anxiety) and not just the traditional disease symptoms (like bloating, weight loss, diarrhea).

2. HELP WITH THE HIGH COST OF GLUTEN-FREE FOODS
• Introduce 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.

3. ENSURE AVAILABILITY OF SAFE FOODS OUTSIDE THE HOME
• Require all publicly funded health institutions (hospitals, long term care homes, treatment facilities or assisted living homes) to provide adequately funded, safe gluten-free foods.
• Develop regulations for official and standardized allergen and gluten menu declarations in food service delivery (restaurants, facilities, airlines, etc.) to protect all Canadians with medical dietary needs.
• Develop regulations to truly reflect product content and to standardize the acceptable use of “gluten free” on food labels.

READ FULL SURVEY 

• We acknowledge funding support from Takeda Pharmaceuticals, the Ottawa Celiac Canada Chapter, Promise Gluten-Free, and many donors and local CCA chapters for making this happen.


 

Celiac Canada announces research award for world's first oat study & calls for 2024 applications. JAN 15TH 2024

James A. Campbell winners to lead study on oats for the newly diagnosed.

 

FOR IMMEDIATE RELEASE.

MISSISSAUGA, January 15th 2024 – The winner of Celiac Canada’s 2023 J.A. Campbell Main Grant of $25K has been awarded to Dr. Maria Ines Pinto-Sanchez, a gastroenterologist & Director of the Celiac Clinic at McMaster University. Dr Sanchez leads a nationwide team of top researchers to evaluate the effect of late versus early introduction of gluten-free oats in newly diagnosed patients with celiac disease. 

An international review revealed there are no clinical guidelines anywhere in the world about oats for people with celiac disease. Because oats are usually cross contaminated with gluten, eating them can bring on severe symptoms in celiac patients. Yet, gluten-free oats offer vital nutrients, such as manganese, B-vitamins iron that are missing because wheat, rye and barley are off the table. These vitamins are critical for child growth and development.

“This study, the first of its kind in the world, will determine the best clinical approach for the introduction of oats into a celiac diet and ongoing disease management”, explains Melissa Secord, Executive Director of Celiac Canada. “The results are a potential game changer for nutrition therapy for celiacs who have no other cure than a gluten-free diet”.

Celiac Canada (CCA) is now calling for applications for the 2024 research grants – the main J.A. Campbell Research Award and a Young Investigator Award.

Since 2000, Celiac Canada has been the largest single-funder of celiac disease (CD) research dedicating over $430,000 to find, treat and curing the disease. The Dr. J. A. Campbell award is the nation’s only celiac-specific research grant program.

The main award offers a grant of up to $25,000 for research projects of a scientific, and/or medical nature in CD, dermatitis herpetiformis, non-celiac gluten sensitivity or socio-economic or nutrition implications of delayed diagnosis and/or living with these conditions.

The Young Investigator Award bestows $5,000 for research by students who have recently completed degrees/training. The 2023 grant goes to Mark Wulczynski, PhD at McMaster University under the supervision of the internationally acclaimed Dr. Elena Verdu in the department of Medical Sciences. Mark’s study looks at the role of fibre in the small intestine, hoping to lead to potential treatments that reduce inflammation from exposure to gluten.

Lizbeth Wall, Celiac Canada president knows how much research matters. “CD research is severely underfunded compared to many other digestive diseases, let alone mainstream health conditions. There’s often a lack of respect for how serious this autoimmune genetic disorder is, which impacts one percent of the world’s population,” explains Wall. “Thanks to donors, we have been able to take a leadership role in funding Canadian research to help improve diagnosis rates and empower people living with the disease to live better lives and reduce costs to the healthcare system.”

About the Celiac Canada

Celiac Canada (CCA) is the only national charity in Canada championing how to find, treat and cure celiac disease so patients can safely manage their lifelong gluten-free journey. A united hub for the best medical, lifestyle and policy solutions that improve access to safe gluten-free food, standards of care and world-class education/research. CCA changes minds, hearts, laws & lives.

Media Contact. Marina Michaelides, Director Marketing & Sponsorships

(780) 940-5669

Email: Marina.Michaelides@celiac.ca

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Dr. Diana Mager from the University of Alberta speaks with Sue Jennett, of a Canadian Celiac Podcast, about her Conquer study on a food guide for celiac kids.


 

2021 Virtual Conference Sessions (November, 2021) Listen to the sessions


 

The economic and social costs of the gluten-free diet

With support from a James A Campbell Grant, University of Manitoba researcher sheds a light on the economic, social and health cost of the gluten-free diet.

 



 

 

 

 Current and emerging trends in coeliac disease. (November 24, 2020)

Click to read abstract


 

More turkey dinners for people with celiac disease? (October 2020)

Researchers find combo of tryptophan with probiotics may help them heal

Click for Study


 

The risk of contracting COVID-19 is not increased in patients with celiac disease

This past spring CCA along with many patient organizations across the world participated in a study of patients with celiac disease (CeD) and their experience and knowledge of COVID-19.  Numerous studies suggest that celiac disease (CeD) is associated with an increased risk of respiratory infections. However, how it relates to the risk of COVID-19 is unknown. To address this gap, the investigators conducted a cross-sectional study to evaluate whether patients with self-reported CeD are at an increased risk of contracting COVID-19. Patients were asked to complete an online survey and a total of 18,000 individuals participated. The Canadian celiac community represented the vast majority of participants in the study and we thank them for their participation. The study concluded that patients with CeD have similar odds of contracting COVID-19 and may not need to take additional precautions to prevent exposure aside from the recommended to the general public. Longitudinal studies employing repeated measurements will contribute to a better understanding on whether the risk of contracting COVID-19 in CeD changes over time.

Click to read

-October 11, 2020


 

CCA surveyed thousands of Canadians with celiac to see what they know about oats.

Click to read Statement

-May 2020


Organic pollutants and increased risk of celiac disease

-May 2020


Association Between Inflammatory Bowel Diseases and Celiac Disease: A Systematic Review and Meta-Analysis

In a systematic review and meta-analysis, the study found an increased risk of IBD in patients with celiac disease and increased risk of celiac disease in patients with IBD, compared with other patient populations. High-quality prospective cohort studies are needed to assess the risk of celiac disease-specific and IBD-specific biomarkers in patients with IBD and celiac disease.

-May 2020


Incidence of Celiac Disease Is Increasing Over Time: A Systematic Review and Meta-analysis

CCA Research grant winner James King lead an international meta-analysis on the growth of celiac disease.

Click here for PubMed link.

Click here to watch a video presentation.

April 2020


Patients With Celiac Disease on Gluten-Free Diets Consume Measurable Amounts of Gluten – March 2020

This study received funding from CCA’s James A. Campbell Research Fund. Dr. Donald Duerksen. The Doggie Bag Study


Real-world Gluten Exposure in Patients With Celiac Disease on Gluten-Free Diets, Determined From Gliadin Immunogenic Peptides in Urine and Fecal Samples – March 2020


Sheffield researchers confirm coeliac disease can damage the brain  – February 2020


Undeclared Gluten in Products Containing Gluten-Free Oats – Canadian Food Inspection Agency Survey, published November 2019


European Clinical Practice Guidelines for Celiac Disease (ESPHGAN) – October 2019


Takeda acquires global license for investigational therapy for celiac disease following positive 2A clinical trial  – October, 2019


Predicting Intestinal Healing – October, 2019


Cross-Contact Study – Do families really need two toasters?

Read what CCA recommends!

– October 2019


Metabolism of wheat proteins by intestinal microbes: Implications for wheat related disorders – September 2019


Silent celiac disease common in relatives of patients – September, 2019

Celiac disease: should we care about microbes? – August 2019

Survey of the initial management of celiac disease antibody tests by ordering physicians

Gluten immunogenic peptide excretion detects dietary transgressions in treated celiac disease patient – March 2019

Assessment of the knowledge of the gluten-dree diet amongst food handlers in health care institution care facilities – March 2019

Normalization Time of Celiac Serology in Children on a Gluten-free Diet

Genetic Overlap Between Autoimmune Disease and NHL Not Supported by Genome-Wide Association Study

Innovate Biopharmaceuticals, Inc. Announces First Patient Dosed in the First Phase 3 Clinical Trial for Patients with Celiac Disease

World’s first diagnostic blood test for celiac disease in sight

The National Institutes of Health (NIH) Awards Another Major Grant to ImmunogenX to Conduct a Clinical Trial for Latiglutenase

Why people with celiac disease suffer so soon after eating gluten

New study calls for screening of family members of celiac disease patients

Research publications by Professional Advisory Council,
Canadian Celiac Association (2003-2018)

Duerksen D, Pinto-Sanchez MI, Anca A, Schnetzler J, Case S, Zelin J, Smallwood A, Turner J, Verdu E, Butzner D, Rashid M. Management of Bone Health in Patients with Celiac Disease: A Practical Guide for Clinicians. Canadian Family Physician 2018 Jun;64(6):433:438 Click here for article

Pulido O, Zarkadas M, Dubois S, MacIsaac K, Cantin I, La Vieille S, Godefroy S, Rashid M. Clinical Features and Symptom Recovery on a Gluten-Free Diet in Canadian Adults with Celiac Disease. Canadian Journal of Gastroenterology 2013 Aug;27(8):449-453  Link to Abstract

Zarkadas M, Dubois S, Collins K, Cantin I, Rashid M, Roberts K, La vieille S, Godefroy S, Pulido O. Living with Celiac Disease and a Gluten-Free Diet: A Canadian Perspective. Journal of Human Nutrition & Dietetics 2013;26(1):10-23 Click here for study

Rashid M, Zarkadas M, Anca A, Limeback H. Oral Manifestations of Celiac Disease: A Clinical Guide for Dentists. Journal of Canadian Dental Association 2011 Apr;77:b39 Also reprinted in Journal of Michigan Dental Association 2011 Oct;93(10):42-6 and Journal of the Pierre Fauchard Academy (www.fauchard.org/) 2012, Mar/Apr;57(2):84-86 Click link to journal

Rashid M, Butzner JD, Warren R, Molloy M, Case S, Zarkadas M, Burrows V, Switzer C. Home Blood Testing for Celiac Disease: Recommendations for Management. Canadian Family Physician 2009 Feb;55:151-153 Link to abstract

Rashid M, Butzner JD, Burrows V, Zarkadas M, Case S, Molloy M, Warren R, Pulido O, Switzer C. Consumption of Pure Oats by Individuals with Celiac Disease: A Position Statement by the Canadian Celiac Association. Canadian Journal of Gastroenterology 2007 Oct;21(10):649-651

Cranney A, Zarkadas M, Graham ID, Butzner JD, Rashid M, Warren R, Molloy M, Case S, Burrows V, Switzer C. The Canadian Celiac Health Survey. Digestive Diseases & Sciences 2007;52(4):1087-1095 Canadian Celiac Health Survey

Zarkadas M, Cranney A, Case S, Molloy M, Switzer C, Graham ID, Butzner JD, Rashid M, Warren R, Burrows V. The Impact of A Gluten-Free Diet on Adults with Coeliac Disease: Results of a National Survey. Journal of Human Nutrition & Dietetics 2006;19:41-49

Rashid M, Cranney A, Zarkadas M, Graham ID, Switzer C, Case S, Molloy M, Warren R, Burrows V, Butzner JD. Celiac disease: Evaluation of the Diagnosis and Dietary Compliance in Canadian Children. Pediatrics 2005;116:e754-e759 Click here for article

Cranney A, Zarkadas M, Graham ID, Switzer C. The Canadian Celiac Health Survey-The Ottawa chapter pilot. BMC Gastroenterology 2003;3:8

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