We’ve come to the end of another Celiac Disease Awareness Month. We hope you have had chance to learn a bit more about celiac disease and how it impacts your health, ways to stabilize and improve your health, have your family screened and get your glow back! This issue has a bit of everything from highlights of the education we presented, information that you might have missed, COVID-19 resource updates and new research.
THIS ISSUE HAS BEEN GENEROUSLY SPONSORED BY PROMISE GLUTEN FREE
DID YOU MISS OUR ONLINE CONFERENCE?

You’re in luck! We recorded our six hours of education and now offer each individual speaker’s session along with the question and answer sessions on CCA’s YouTube Channel.

Thanks to Lead Education Partners, ProventionBio and Takeda for their support.

Sessions include:
  • COVID-19 & Celiac Disease – Dr. Donald Duerksen
  • Neurology and Celiac Disease – Dr. Iain Croall
  • James A. Campbell Memorial Lecture: World-wide Incidence of Celiac Disease– James King
  • What’s new in clinical research – Dr. Doug Jacobstein
  • Children with Celiac Disease – Dr. Dominica Gidrewicz
  • Managing Stress and Anxiety through COVID-19 with Celiac Disease – Justine Dowd
  • The D.O.G.G.I.E Bag Study – Dr. Donald Duerksen with BONUS: Q&A Session 


Top Tweets from CCA’s Virtual Conference

We asked our emcee, Mark Johnson (without his crazy jokes) to share his favourite tweets from #CCAConf2020. Be sure to follow us on Twitter at www.twitter.com/CCAceliac

  1. Don Duerksen –There is no higher risk of contracting #covid19 even if you have been glutened.
  2. Don Duerksen – Dermatitis Herpetiformis biopsy: it could be done by a family doctor but there is a chance that you may need a dermatologist referral.
  3. Selena DeVries – Nuts do not need to be certified gluten free in Canada in order to be considered safe. However, hemp and flax do!
  4. Justine Dowd – Wholistic strategies to managing stress and anxiety: nutrition, sleep, exercise, and mindset.
  5. Meghan Donnelly – Craving tacos but your local store is out of taco shells? Try using lettuce instead! #healthyswaps
  6. Don Duerksen – During #COVID19 times, biopsies are not being done, but will hopefully return soon. Still possible to have blood tests done, in preparation.
  7. Doug Jacobstein – gastroenterologist @ProventionBio shares burden of #celiac and why people want drug as adjunct and/or replacement of #glutenfree diet
  8. Dominica Gidrewicz –Parents do not need to worry about having #glutenfree shampoo or sunscreen for their children as there isn't a detectable amount of gluten.
  9. Dominica Gidrewicz – A positive TTG does not automatically mean celiac disease.
  10. Iain Croall: Results for cognition and mood – celiac patients were significantly more likely to be "unhappy" with their own health.
  11. James King – Overall incidence of #celiac from many studies from around world increasing 7.5% over several decades
  12. Iain Croall – Neurological symptoms are common in typical in newly diagnosed celiac disease
CCA SUPPORTS McMASTER UNIVERSITY TEAM ON COVID-19
AND CELIAC DISEASE SURVEY

Jamie Zhen, Dr. Maria Ines Pinto-Sanchez

CCA was asked to team up with McMaster University’s Farcombe Digestive Disease Centre to survey Canadians with celiac disease and gluten disorders on their concerns over COVID-19. The survey has now been shared around the globe. Since the initial launch below, nearly 3,000 Canadians have responded. A one point it crashed the survey site! Here’s a preliminary look at the early results and what your community is saying.

Survey Duration: March 31, 2020 – May 11, 2020 (42 days)
Total Responses: 717
Location: Canada

Demographics
Participants of the survey were predominantly female (89.9%), were an average age of 51.24, in the age range 65+ (24.76%), resided in Ontario (49.8%), and are supporters of the Canadian Celiac Association (64.0%). 2 participants say they completed the survey twice.

Celiac Diagnosis
The average time since celiac disease diagnosis was 11 years and of those diagnoses, most were done with both blood work AND biopsy (59.7%). Most patients state that their celiac disease is well controlled (71.5%) and only 7.2% have celiac symptoms more than 2 times a month.

Participants mostly follow a strict gluten-free diet (GFD) (76.5%) with 15.9% following a GFD with rare accidental gluten consumption. Of these, the average time since initiating a GFD was 10.7 years and 24.6% of participants have other household members that follow a GFD.

COVID-19
Of the participants, 10.5% have travelled outside Canada the past month before survey completion, one per cent have been within six feet of someone who tested positive for COVID-19, 2.3% have visited their physician/ER because they thought they contracted COVID-19, and 16 (2.9%) have been tested for COVID-19. Of those tested, two tested positive.

In the last month, 1.9% of participants have had a fever, 14.5% have had a cough, shortness of breath, or difficulty breathing, and 0.6% have been hospitalized for a respiratory infection.

Most patients do not have a lung condition, heart condition, diabetes, are immunosuppressed, or pregnant (72.9%). Of those who do, most specified that they have asthma or diabetes.

COVID-19 Awareness
Patients generally state that their knowledge on how COVID may affect celiac disease patients is a 3/5 and rated it as “good” (34.7%), with 28.1% rating it “poor” and 8.2% rating it “very poor”.

Most participants are not taking extra precautions for COVID-19 as a result of their celiac disease (70.2%), while those who do, state they exercise social distancing, staying at home, increased hand hygiene and PPE use.

Most participants are not aware or are unsure if there is a generally increased risk of infection due to their celiac disease (85.1%) and 82.9% state the same in terms of their COVID-19 risk.

Patient Questions
Patients generally learn about the relationship between COVID-19 and celiac disease through the Canadian Celiac Association (CCA) website (50.4%) with 60.0% wanting more information.

The survey collected nearly 300 comments from patients. What do you want to know?
  • Anything related to COVID-19 and celiac disease.
  • What is the risk of COVID in celiac? What is the % of celiac disease in positive COVID-19 cases.50%
  • Where are we able to get the latest and most reliable information?
  • More research in celiac and COVID
  • How to access to GF food (flour and bread mixes) when shopping. Limited access to GF flours; not available as usual.
  • Food security for people on GFD
  • Can GF food be available in one store rather than need to go to several stores to get different GF items?
  • Can celiac access GF food from pharmacies, as in the UK ? Can GF food be reserved for celiac patients, those who really need it?
  • Do celiac disease patients have an increased risk of contracting COVID-19?
  • What if our celiac disease is well controlled?
  • What type of precautions should we incorporate into our lives?
  • How we can manage stress?
  • How can we differentiate celiac symptoms from COVID symptoms?
  • Do we have an increased risk of serious complications from COVID-19?
  • Are celiac disease patients immunosuppressed?
  • Can pneumococcal vaccine help?
  • If I have celiac disease and other autoimmune diseases, am I at increased risk for COVID?
  • If I have celiac disease and asthma, am I at increased risk of getting complications of COVID?

Have you taken the survey yet or have something new to report? Now any Canadian is encouraged to take the survey. These results will be cross-tabulated against people with celiac disease and gluten disorders. Click here to take or share!
CELIAC AND CORONAVIRUS

Patients with only celiac are not immunocompromised, unless they are taking medications for other medical conditions which are immunosuppressive. Like everyone, they should exercise careful infection control practices, including washing hands with soap and water frequently, and avoid touching the eyes, nose and mouth. Patients with other comorbidities such as Type-1 diabetes may be at higher risk of severe infection and should take additional precautions.

CCA has developed a collection of resources for you during the COVID-19 outbreak. Resources include:
  • COVID-19 and Celiac
  • Home deliveries of gluten-free products
  • Take-out/dining in options
  • Health Canada updates and bulletins
  • Food Banks, Food Donations and Food Security
  • In addition, CCA’s conference offered two sessions on celiac disease and COVID-19 and ways to cope and manage stress during the crisis
  • Visit our YouTube Channel for a recorded webinar on how to empower your health through nutrition
CCA HAS FLAGGED SOME POTENTIAL ISSUES WITH BARLEY
Food Labelling for Some Barley Based Ingredients

The Canadian Food Inspection Agency (CFIA) has recently issued an advisory to allow some food products to be sold in Canada that were previously destined for the United States market.

While health and safety related labelling requirements such as Canada’s enhanced labelling regulations for gluten sources still apply, CCA has flagged some potential issues with BARLEY. There is a potential risk that food produced in Canada but packaged and labelled for the United States might not identify barley containing ingredients, as required on food sold in Canada. Consumers and purchasers should be alert to malt and yeast extract ingredients listed on US labels. Malt is barley based. Yeast extract can be found in soups, sauces, seasoned chips and other savoury products.

CCA and Coeliaque Quebec have had discussions with Health Canada on this issue and continue to advocate on behalf of the community.

CCA TIP: US labels will be in English only, instead of bilingual.

PEOPLE SHOULDN'T HAVE TO CHOOSE BETWEEN GOING HUNGRY OR EATING FOOD THAT MAKES THEM SICK

More individuals across Canada than ever before are using food banks and agencies. For people with celiac disease and gluten disorders it can be particularly challenging as many food bank volunteers do not understand celiac disease and gluten disorders and the complexity of the gluten-free diet.

Since the COVID-19 outbreak, CCA has approached Food Banks Canada and Second Harvest along with other agencies to ensure gluten-free food gets to those who need it. CCA has provided educational resources to help make these agencies better understand the need.

In the meantime, we have reached out to our GF suppliers to help direct food donations to those agencies who will ensure product gets to people with celiac and gluten disorders.

Read our press release on our announcement with Promise Gluten Free and Canadian food banks.
Contact our Client Support Desk if you are struggling and need confidential advice. Clientsupport@celiac.ca

Thanks to generous donors like you, advocacy, education and peer support is being done for the celiac disease and gluten-free community.

Donate today to keep the momentum going
James A Campbell Young Investigator Adriana Mudryj shines a light on what your missing
Mudryj’s grant investigated ‘Characterizing dietary gluten avoidance in the Canadian pediatric and adult population’. This study represents the findings from the evaluation of the 2015 Canadian Community Health Survey, a national health survey that collects detailed information from a representative sample of Canadians about their eating habits, use of supplementation, as well as other health factors. Respondents included 20,487 Canadians ≥ 1 year old, who were divided into those who avoid dietary gluten, and those who reported no avoidances.

Individuals avoiding dietary gluten are at risk for nutritional deficiencies, which may be exacerbated by additional dietary avoidances. Canadians who avoided gluten had significantly lower intakes of folate, vitamin B12, vitamin D, iron, sodium and calcium compared with those who did not avoid any food groups. More than 20% of those who avoided gluten also avoided dairy products. Healthcare providers, including Registered Dietitians, gastroenterologists, and primary care physicians, should provide guidance to ensure individuals avoiding gluten meet their optimal nutritional goals.

TIP: Get your glow back – To help boost your nutrition and immune system, check out CCA’s Nutrition Fact Sheets created by our Dietitian team, here. https://www.celiac.ca/living-gluten-free/diet-nutrition/get-nutrients-into-your-gf-diet/
CCA LEARNS MORE ABOUT GLUTEN-FREE OAT CONSUMPTION

Early this spring CCA issued a research survey on oats. Nearly 4,000 individuals took part in the survey – thank you for the great response. The results are in and you can read a summary here…

CCA HAS TEAMED UP WITH PROMISE GLUTEN FREE

A great way to get your glow back is eating foods that are fibre-rich and with added nutrients. Gluten-free breads have come a long way in variety, consistency and taste. CCA has teamed up with Promise Gluten Free for a ‘How Do You Sandwich’ contest to celebrate great gluten-free sandwiches. Promise Gluten Free breads are gluten free, dairy free, vegetarian, soy free, very high fibre, low in sugar and low in saturated fats.

DYK: Having 2 slices of Promise’s Multigrain will help meet your daily requirements of fibre which is part of a healthy diet and helps with; bowel regularity and lowering blood cholesterol levels .

We’ve asked three community members to create their own favourite sandwiches and we want you to vote which one is best. Each vote is an entry into your chance to win our Grand Prize – a ‘Year of Great Sandwiches’ prize package with an estimated retail value of $1,000 including product coupons, Breville Smart Press and custom butcher’s block.

Visit our contest page for entry details –
GF 101: GETTING STARTED ON THE GLUTEN-FREE DIET
When: Jun 24, 2020
Time: 7:30 – 8:30 PM Eastern Time

Better Living Gluten Free is a monthly electronic publication of the Canadian Celiac Association.
Copyright © Canadian Celiac Association
If you have any questions, please contact info@celiac.ca.  

The contents of Better Living Gluten Free (BLGF) are provided in good faith, for information purposes only, and using the most current information available subject to amendment and should not be used as a substitute for the advice of a qualified health professional. The Professional Advisory Board of the Canadian Celiac Association (the “CCA”) has not reviewed the contents of BLGF. Use of the information is at your own risk. The CCA does not endorse any product referenced in BLGF. To the fullest extent permitted by law, the CCA, its local Chapters and all persons involved in compiling this publication disclaim any responsibility for, and make no representations or warranties regarding, the information provided. In no event will the CCA, its Chapters, or those persons involved in compiling this publication be liable for any damages of any kind resulting from the use of the information. Please review the CCA’s disclaimer policy on its website at https://www.celiac.ca/privacy-policy/