This issue of Better Living Gluten Free features highlights of research in Canada and around the world. Thanks to many of you, the Canadian Celiac Association (CCA) has been able to invest and partake in some ground-breaking international research events. For nearly 20 years, we have directly invested in Canadian researchers and are pleased to highlight one of our 2019 awardees with you. No time in history has there been so many groups, companies and individuals pushing towards new solutions for people with gluten-related conditions.
THE HOTTEST ISSUES IN THE WORLD OF CELIAC

At the CCA's State of Celiac and Gluten Free in Canada Leadership Forum this May, we delved deep into the world of celiac research. We asked event co-chair, Mark Johnson, to give us some highlights from this engaging day of discussion.

Our five panelists were:
  • Dr. Don Duerksen, chair of the CCA's Professional Advisory Council
  • Dr. Elena Verdú, a professor of gastroenterology at McMaster University
  • Dr. Jocelyn Silvester, a pediatric gastroenterologist and instructor of pediatrics at Harvard Medical School
  • Dr. Daniel Leffler, a gastroenterologist at the Celiac Center at Beth Israel Deaconess Medical Center, and associate professor of medicine at Harvard Medical School. He works for Takeda Pharmaceuticals
  • Kristin M. Neff, a clinical operations expert at ImmusanT
Our panel confirmed - the prevalence of celiac has gone up significantly in the last twenty years as have the incidence of type 1 diabetes, allergies, etc. Why is this? Our genes are not changing, says Dr. Leffler, so it must be environmental factors causing the increase.

Dr. Verdú suggested infections and antibiotic overuse as possible factors, and her lab is studying bacteria's effects. With the support of funding from the CCA's J.A. Campbell Research Fund, her lab has been doing innovative work looking at mice who have been given celiac disease and looking at ways of playing with the digestion system to see whether we can reduce the risk that gluten poses.

Turning to treatment (and the gluten-free diet), Dr. Silvester has done extensive research comparing the outcomes of celiac treatment while children were under her direct management versus when they were not monitored.
She and Dr. Leffler reported that people, both children and adults alike, are getting ‘glutened’ (exposed to gluten) and exhibiting symptoms despite strictly following the diet. Both experts agreed that the diet alone is insufficient.

The panel also discussed potential drugs or therapies for celiac disease. The good news is several therapies are in the testing stage including a drug that tries to convince the immune system that gluten is not a bad thing, and reforms the gluten molecule into something benign to a celiac or "resetting" the immune system to a non-celiac state.

Kristin Neff, works for ImmusanT which has been developing a therapy for celiac disease - "Nexvax2 Therapy" - to protect against inadvertent gluten exposure for celiac patients on a gluten-free diet. Unfortunately ImmusanT had to suspend testing as they found people were not any more protected from gluten by the vaccine than they were by the placebo. 
TOP 10 TWEETS

CCA attended the bi-annual International Celiac Disease Symposium (ICDS) in Paris. We’ve selected Dr. Joel Murray’s top 10 summation remarks.

  1. Genetics: Did it start with the Neanderthal? Maybe!
  2. Wheat: It is complicated! Wheat has not changed so we can't blame the new wheat on increased incidence of CD
  3. Triggers of celiac: TEDDY study looking at enteroviruses. High wheat intake and risk of celiac disease may be a trigger.
  4. The patient voice: All is not well. Frequent symptoms as 59% are missing work. Some are so vigilant that they are becoming anxious and impacting mental health.
  5. Non-Celiac Gluten Sensitivity: CD is a well-defined autoimmune disorder. Non-celiac gluten sensitivity is not. Double blind food challenges will be needed to see what is happening in this area
  6. Diagnosis: Serology IgA tTg is central to detection and diagnosis. Biopsy avoidance now in children. Mass screening vs case finding is being done.
  7. More diagnosis: All is not well. Patients are walking away when faced with gluten challenge. We're losing patients.
  8. Refractory CD: Treatment could be steroids, chemo and stem cell treatments.
  9. Treatments: The FDA has granted Fast Track Designation for TIMP-GLIA, a new nanoparticle-based therapeutic being studied for the treatment of celiac disease. #ICDS2019 received an update of this trial.
  10. Treatments: L15 Story – Play a crucial role in damage. Stressed epithial cells are involved. Clinical trials with anti-IL 15 (AMG 714). reduces symptoms. More to come!

Follow us on Twitter @CCAceliac and check out the rest of our Twitter feed from the event at #ICDS2019
CCA AWARDS
In 2019, CCA awarded two James A. Campbell Research awards.

CCA conducted a Q&A with our main grant winner, Dr. Diana Mager. 

JA Campbell Research Grant: Diana Mager, PhD MSc RD, Associate Professor, Clinical Nutrition.

Project title: Assessment of feasibility and uptake of a gluten-free guide for Canadian children and youth in clinical and community settings.

Project overview: The gluten-free diet (GFD) has become a highly popularized diet with an estimated 29% of the Canadian public consuming the GFD for either health indications (celiac disease (CD) or the perceived health benefits of the diet. While perceived as a healthy diet alternative by many, those following a GFD, may rely on processed and packaged GF food which are often higher in simple sugars, glycemic index (GI), glycemic load (GL) and saturated fat than their gluten containing counter-parts. In addition, lack of uniform policies regarding nutrient fortification (e.g. folate) in gluten-free grains in Canada often place individuals consuming the GFD at risk for developing suboptimal micronutrient intake and poor diet quality (DQ). This interdisciplinary team is addressing this gap by the development of an evidenced-based GF food guide for Canadian children. This grant submission will examine health care practitioner and child-parent’s perspectives regarding GF-nutrition guide content and will compare the integration of the GF-food guide content into nutrition counseling on outcomes related to diet adequacy, nutrition literacy and adherence to the GFD in children newly diagnosed CD.
CCA: Dr. Mager, what inspired you to study this area and celiac disease in general?
Mager: I was inspired to pursue research in this area from the children and families I saw as a Registered Dietitian in my dietetic practice. When I moved to Edmonton, Dr. Justine Turner had just started her new paediatric celiac clinic. A few of us in the clinic wanted to work on research that would promote the health and wellbeing of children with celiac children disease.

CCA: What other celiac research studies have you participated in or lead?
Mager: I lead a variety of studies examining food costs associated with the gluten-free diet, health relating to quality of life and ongoing new projects that look at the impact of the gluten-free diet on blood sugar control in children with celiac disease and type 1 diabetes but my biggest focus is on the development and testing of the new food guide.

CCA: What are some of the biggest challenges to your research and celiac disease in general?
Mager: The biggest challenge is in seeking research funding to support this work. The greatest reward is in producing work that will help children with celiac and their families as well as the children and adolescents told me that they needed the tool. In particular the local Edmonton and Calgary chapters gave me lots of feedback, as well as the Toronto chapter.

CCA: When your work is complete, how do you hope to deliver this resource to the community?
Once complete, it will be freely accessible via the Internet. CCA will be one of the partners sharing the information across Canada.
WHO IS JAMES ALEXANDER CAMPBELL? 

Dr. Campbell had an extensive background in the field of nutrition. He worked in the Federal Department of Agriculture, the Drug Directorate of Health Canada, and became Director of the Nutrition Bureau, Health Protection Branch in 1972, where he was officer-in-charge of the Nutrition Canada Survey.

Dr. Campbell’s contributions to the CCA began in 1980, as advisor to the Ottawa Chapter, and then as Chairman of the Nutrition Committee and National Advisory Board (now Professional Advisory Council). He contributed to the CCA’s Pocket Dictionary on Acceptability of Foods and Food Ingredients for the Gluten-Free Diet and lead discussions with federal government departments and agencies to improve gluten-free labelling among others. Dr. Campbell designed the first Canada-wide study of persons with celiac disease and dermatitis herpetiformis which was one of the largest stuides of its kind ever done in the world. 
DID YOU KNOW?
Since 2000, CCA has invested in nearly $350,000 in Canadian researchers.
PARTICIPATING IN CELIAC RESEARCH

CCA recently held an interactive webinar with Takeda Pharmaceuticals and ProventionBio, two companies who are actively leading research and clinical trials into gluten disorders. People often do not know what is involved in a clinical research trial and what steps and precautions that companies are required to take before they can begin human trials. The session featured gastroenterologists Drs. Dan Leffler and Doug Jacobstein. As new clinical trials come to Canada, see if you’d like to participate.
PRECAUTIONARY LABELLING MARKET RESEARCH SURVEY RESULTS

While Canada does have some of the more progressive labelling laws in the world, many gluten-free consumers have shared with CCA their frustration over precautionary labelling of gluten-free and other products. What is safe to consume? 

Last May, CCA launched a market research survey across Canada in May asking gluten-free consumers and dietitians to gauge individual shopping behaviours. More than 2,500 individuals completed the survey in just under one week. The preliminary results of the study were shared at CCA’s State of Celiac Disease and Gluten Free in Canada Leadership Forum.  

We are pleased to release the final results and analysis at upcoming webinar on Wednesday, November 27, 2019 at 9 pm Eastern. Registered dietitian and survey lead author Shelley Case will take us through the findings and then share tips on how you can navigate the grocery aisles.
CCA’s PROFESSIONAL ADVISORY COUNCIL REVIEWS 'TOASTER' STUDY

Do I really need a second toaster and a separate knife for cutting cupcakes?
Cross-contact in the kitchen study

The recent study published by researchers from the Celiac Disease Program at the Children’s National Health System and the Harvard Celiac Disease Program looked to see how much gluten cross-contamination would occur with three different types of food preparation methods: cooking pasta, toasting bread and slicing cupcakes. 

To test gluten transfer when cooking GF pasta they used the same pot after cooking gluten-containing pasta first. When reusing water contaminated with gluten to cook GF pasta, all 12 samples had gluten detected greater than > 20 ppm. When this cooked pasted was rinsed by running it under cold water, five out of six samples had detected gluten, but less than < 10 ppm. If the shared pots were rinsed with only water or scrubbed with soap and water before cooking the GF pasta, there was no detectable gluten. Thus, either cleaning method is effective to prevent gluten transfer.

Gluten transfer was tested when toasting GF bread in a shared toaster with gluten-containing bread (rolling and pop-up) and visible crumbs present. Toasting in only a rolling toaster detected gluten in 20% of samples at 5-10 ppm, while toasting in a shared pop-up toaster was not associated with detectable gluten in the 20 samples tested. 

Thirdly, a GF cupcake was sliced with a knife after slicing a frosted gluten-containing cupcake which resulted in 46% of the samples having detectable gluten at 10-20 ppm and 7% had detectable gluten over > 20 ppm. However, if the knife was washed either with soap and water, rinsed in running water, or cleaned with antibacterial hand wipe, all three methods of cleaning the knife were equally effective with 93% of the samples had undetectable gluten.

PAC CONCLUSION:

Certainly, the results of this study are intriguing. With this published data, there is evidence to show that sharing water to cook GF pasta is a significant source of contamination. Hopefully this study should provide more support to those advocating for safer food preparation practices in restaurants. Other results, however, such as sharing a toaster, should be interpreted with caution as only 20 samples were tested for each toaster and a larger sample size would be needed to confirm the results . Given the severity of symptoms some patients may develop after being contaminated with gluten, keeping a dedicated GF toaster seems like an easy measure. Finally, this study confirms that simple cleaning measures for cooking utensils with soap and water is very effective in eliminating gluten contamination, and indicates using separate utensils and pots for GF cooking are unnecessary.

Reviewed by: Dr. Dominica Gidrewicz, MD, FRCPC, pediatric gastroenterologist,
Assistant Professor University of Calgary

RESEARCH NEWS
Learn about some of the exciting research happening in Canada and abroad.
Check out our Research News page!



HELP US REALIZE THE VISION – FIND, TREAT, CURE.
INVEST IN YOUR FUTURE. LEAVE A LEGACY.

CCA relies on donations to continue investing in Canadian research. Consider donating today or leaving a gift to CCA research in your estate as part of your legacy for future generations. By pooling our efforts, CCA can make more significant investments into research projects that directly impact Canadians now and in the future.


DELIVERING FREE EDUCATION TO HELP YOU


GF 101: NAVIGATING THE GLUTEN-FREE DIET
Date: Thursday, November 14, 2019
Time: 7:30 – 8:30 pm Eastern
Click to register for free: Click here

Join CCA Registered Dietitian Gauri Bawa for our one-hour FREE webinar on how to navigate the gluten-free diet. Perfect for individuals or caregivers of people who are newly diagnosed or just need some extra help. Sessions are interactive. Have your questions ready!

UNDERSTANDING GLUTEN-FREE OATS
Sponsored by West Oak Naturals - Only Oats

Date: Wednesday, November 20, 2019
Speaker: Mike Marshall and Jessica Wu, RD
Time: 9 – 10 pm Eastern
Register for free: Click here

Many people wonder if oats are safe on a gluten-free diet. Learn more about gluten-free oats and how and when to incorporate them into your diet. We’ll hear how gluten-free oats are produced and managed and can be an important part of your overall health regime.

MAY CONTAIN: NAVIGATING GF LABELS IN CANADA

Date: Wednesday, November 27, 2019
Speaker: Shelley Case, RD
Time: 9 – 10 pm Eastern
Register for free: Click here

In spring of 2019, CCA sponsored a market research survey in the spring of 2019 to understand the level of understanding and confusion surrounding precautionary labelling in Canada. Initial results were presented at CCA’s State of Celiac and Gluten Free Leadership Forum. Join CCA Professional Advisory Council member, Shelley Case, for full overview of the results of the study and learn tips on how to read labels and navigate your local grocery stores.
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/