Third Edition ~ August 2017 Chapter Office: (403) 237-0304 Suite 1A, 2215—27 Avenue NE, Calgary, Alberta T2E 7M4 www.calgaryceliac.ca Happy President’s Message 3 CD & Gluten Sensitivities: Similarities, Differences & 6 Uncertainties Summer! Celiac Disease in Children 8 Healthy Cooking Classes 10 Having a Child with CD can 16 be difficult Medical Expense Tax Credit 19 for Celiac Disease When Your Body Fights itself: Understanding Auto- 22 immune Diseases CCA—Update on Barley GF 25 Rod McDaniel Kids Camp Beers Oktoberfest Innocuous Virus can Trigger 28 CD? Annual General Meeting Screening and Diagnosis of 32 Celiac Disease Red Deer News 37 Followup Management of 38 Patients with Celiac Disease Calendar of Events 42 Lethbridge News 43 Travel—NYC 44 Recipes 46 Calgary Celiac News ~ August 2017 2017 - 2018 BOARD OF DIRECTORS & KEY CONTACTS Please Note: To contact the individuals listed below, email: [email protected] President Jim Calverley Board Members At Large Office Manager Linda Cooper Vice President Leslie-Anne McPherson Cheryl Richmond Medicine Hat Satellite Jenna Arseneault Tracy McMillan Secretary Lethbridge Satellite Rick Ratcliff Karen Wickerson Karen Toohey James King Treasurer Red Deer Satellite Ralph Barnett Cinde Little Clarice Schulz Marlene Kallstrom-Barritt Volunteer Coordinator Vacant Newsletter Editor Special Events & Program Linda Cooper Education Committee Coordinator Marie-Claude Beaulieu Cindy Casper CALGARY CHAPTER OFFICE HOURS Tuesday and Thursday 10:00am - 3:00pm If you plan to visit the office, please call first to be sure we are not out at an appointment. Suite 1a, 2215—27th Avenue NE, Calgary, AB Phone: 403-237-0304 Fax: 403-269-9626 Newsletter Submission Deadlines 2017 [email protected] First Edition (February) due January 12 www.calgaryceliac.ca Second Edition (May) due April 13 Third Edition (August) due July 13 Fourth Edition (November) due October 12 Follow us on Twitter: @CalgaryCeliac Find us on Facebook E-mail submissions to Linda Cooper Connect with us on [email protected] The Canadian Celiac Association - Calgary Chapter does not endorse any product, and any reference or advertisement in any edition of this newsletter is not to be construed as a recommendation or an endorsement of that product. Inclusion of such products in our publications is for informational purposes only. The contents of this newsletter are not necessarily the views or opinions of this Association. Calgary Celiac News ~ August 2017 2 President’s Message By Jim Calverley On July 10th, the Edmonton Chapter held a one day Gluten-Free Festival, Conference and Vendor Fair and it was a tremendous success. The day prior to the Conference, there was a tour of the Kinnikinnick Bakery and everyone was extremely impressed with the quality control of the testing of all products entering and leaving the plant. Kinnikinnick continues to expand their list of baked goods and will ship them anywhere in North America. As Albertans we should be very proud of their success. There were a number of excellent speakers including Lynne and Jerry Bigam owners of Kinnikinnick Bakery, Chef Andrew Cowan, Dr. Sheila Crowe, Dr. Connie Switzer, Dr. Diana Mager and blogger Laurie Lynn Lyons. The topics covered were extremely interesting and of course breakfast and lunch was fantastic—especially the desserts. The last speaker was Melissa Secord, the new Executive Director of the Canadian Celiac Association National Office. As I have mentioned in the past, the Gluten Free world is changing and for us to continue to be successful we must also change. Some of the changes Melissa outlined was work will be commencing on a new three year strategic plan, a new logo and website will be up soon. A Gluten Free Restaurant Certification program is coming and there will be some restructuring of the organization. At the local level, we held another record breaking Wendy T’s GF Stampede Breakfast with 15 volunteers working very hard to feed over 600 people. Our thanks to our sponsors Kinnikinnick for the pancakes, Spolumbos Sausages, Judy G—Shine FM’s Kids Fun Zone, the Calgary Stampede’s Welcome Wagon, Batter Boys, the Stampede Indian Princesses and Tallgrass for providing the Omegalicous Botanicals and coconut oil. And lastly to Community Natural Foods for providing the coffee. The Calgary Chapter’s largest fund raising project is volunteering to work the Casino and once again we participated in June. In order to do this we have to fill 36 spots with volunteers and thanks to Ralph Barnett’s hard work and to all the volunteers, it was a tremendous success. We are also looking forward to the Rod McDaniel’s Celiac Kids Camp in August as we will have 55 campers enjoying great times and a week of gluten free food. I hope you all have a wonderful summer and in October please plan on attending our Oktoberfest and Annual General Meeting. As always, we welcome your feedback and suggestions. Calgary Celiac News ~ August 2017 3 @CalgaryCeliac Calgary Celiac News ~ August 2017 4 Talk to your child’s doctor if you are concerned. They may have celiac disease. For more information visit www.aboutkidshealth.ca/GI Calgary Celiac News ~ August 2017 5 Celiac Disease and Gluten Sensitivity: Similarities, Differences and Uncertainties Dr. Daniel Leffler Associate Professor of Medicine, Harvard University Director of Research, The Celiac Center, Beth Israel Deaconess Medical Center, Boston Dr. Leffler started by saying how happy he was to be exception. The average age of diagnosis for celiac visiting Canada, and the province of Newfoundland is around 40. But there can be an onset at any age and Labrador in particular. He emphasized that when there is exposure to gluten. Canada should be proud of the accomplishments of the CCA, because in the United States there is no As we know, the diversity of symptoms makes it unified voice advocating for people with celiac very difficult to diagnose. disease and non-celiac gluten sensitivity. So, what about celiac disease versus non-celiac Some good news: celiac disease is better gluten sensitivity? Here are the current definitions: understood than other auto-immune diseases. It is a Celiac disease is a chronic intestinal immune- multi-system autoimmune disease. It is not an mediated enteropathy precipitated by exposure to allergy, or an intolerance – it is an autoimmune dietary gluten in genetically predisposed individuals. disease and needs to be treated seriously as such. Non-celiac gluten sensitivity (NCGS) relates to one There are a lot of misunderstandings, though. The or more of a variety of immunological, three top myths on celiac disease? 1) It is rare. 2) It morphological or symptomatic manifestations that is not a serious condition. 3) The gluten-free diet is a are precipitated by ingestion of gluten in people in perfect treatment. And as we know, people often whom celiac disease has been excluded. confuse celiac with a food allergy. It’s an autoimmune disease – like type 1 diabetes – NOT a In layman’s terms, celiac disease is an autoimmune food allergy. Celiac is a multisystem immune disorder where the presence of gluten results in disorder, taking an average of ten years to diagnose. damage to the intestinal system. You can only develop celiac disease if you have the required Only 17% of those with celiac disease are genes (HLA DQ2 and DQ8). diagnosed. Dr. Leffler feels – and we agree – that this is unacceptable. But consider…in Finland, For NCGS, this means that you need to have celiac approximately 70% of celiacs are diagnosed. Better disease excluded (through testing) to be in a results are possible! Currently, in North America, position to state you have NCGS. most people on a GF diet are not celiac – and most There have been case reports of NCGS since the people who are celiac are undiagnosed and eating 1970s. The first controlled study was published in gluten. 1980. Interest really began to spike five years ago Gluten is a very tough protein. Cows have four with increased interest in celiac disease and the stomachs to digest their food – we have but one! overflow of the gluten-free diet into the general Gluten goes through the gut intact. If it can enter the population. submucosa of the intestinal lining, tissue For diagnosing celiac disease, what is necessary is transglutaminase, which is present everywhere in a duodenal biopsy compatible with celiac disease the body, can deaminate gluten (remove amino AND one or both of the following: acids) hence changing the shape of gluten and activating the immune system to make antibodies. 1) positive celiac disease-specific serology (tTG, EMA or DGP) As diagnoses of celiac disease have increased, so has the prevalence. More testing has led to more 2) clinical or histological response to diagnosing but there has been no plateau as for gluten-free diet other diseases. All auto-immune diseases are increasing in prevalence; celiac disease is no Calgary Celiac News ~ August 2017 6 What is supportive to the diagnosis is: but the timing of taking the enzymes is tricky. A BL- 7010 polymer being researched would bind to 1) HLA DQ2 or DQ8 (absence of which gluten, making it too large to pass through the excludes CD) intestinal wall. 2) Biopsy proven dermatitis herpetiformis Dr. Leffler also gave a shout-out to conference silver 3) Family history of CD sponsor Glutenpro, a Canadian company, which provides commercially-available genetic testing. Are Note: There are blood disorders that can cause a you a suspected celiac who does not want to do a false positive on the celiac blood test. It is important “gluten challenge” due to harsh symptoms? You to get a biopsy done. should get the genetic test. Modern wheat strains have more alpha amylase trypsin inhibitors than in the past.