CanadianCELIAC - IS KISSING OK? GROWING UP CELIAC
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CCA board of directors A magazine for Canadians with celiac disease and gluten sensitivity Executive Directors WINTER 2020 Treena Duncan, President Meredith Birchall-Spencer Janet Bolton, Vice President Tamara Close David Congram, Secretary Jessica Danford Andrew Kotys, Treasurer Selena DeVries Contact us Canadian Celiac Association “Life is like a box of chocolates, you never know 1450 Meyerside Dr., Suite 503 Mississauga, ON. Canada L5T 2N5 what you’re going to get.” – Forest Gump. Phone: 905.507.6208 or 800.363.7296 Fax: 905.507.4673 | Email: info@celiac.ca www.celiac.ca Managing life with celiac disease and gluten sensitivity can sometimes feel like Forest Gump’s quote. Inside this edition, we try to dispel some of the myths or Canadian CELIAC bring facts forward from kissing, gluten in makeup and school supplies while offering tips on how to manage your disease after diagnosis to help take out some A MAGAZINE FOR CANADIANS WITH of the mystery. Our Growing Up Celiac ongoing features shows how kids in sports CELIAC DISEASE AND GLUTEN SENSITIVITY and at a Calgary camp are empowering themselves. Editorial Board Melissa Secord Kim Shiffman FOLLOWING UP AFTER DIAGNOSIS. Page 7 Janet Dalziel Jessica Danford RonniLyn Pustil Gayle Grin HE SHOOTS, HE SCORES. Page 13 Graphic design by www.gaylegrin.design BABY BITES. Page 16 Contributors Janet Dalziel Dr. Justine Dowd Dr. Mohsin Rashid Cheryl Richmond PUCKER UP: KISSING AND Dr. Donald Duerksen Dr. Dominica Gidrewicz Léa Saad Melissa Secord COSMETICS. Page 23 RonniLyn Pustil Dr. Jocelyn Silvester COVER PHOTO BY LÉA SAAD THE FLOURS THAT BE: BAKING Copyright © 2020 by the Canadian Celiac Association Publication Agreement#40787580 FOR SUCCESS. Page 32 Canadian Celiac is published for the Canadian Celiac Association, L’Association Canadienne de la maladie coelique. Reproduction of this magazine in whole or in part is prohibited without the express written consent of the publisher. Disclaimer: The contents of Canadian Celiac 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 medical professional. The Professional Advisory Council of the Canadian Celiac Association (CCA) has not reviewed the contents of Canadian Celiac. Use of the information is at your own risk. The CCA does not endorse any product referenced in this publication. To the fullest extent permitted by law, the CCA, its local chapters and all persons involved in the compiling of this publication disclaim any responsibility for, and make no representations or warranties regarding the information provided. In no event will 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. VOLUME 4 | ISSUE 1 2 Canadian CELIAC | 3 2 | Canadian CELIAC
From the editor’s desk CCA board nominations When we hit a milestone like a new decade, we often look back and stake stock or regroup and cast our eyes ahead. What’s on our horizon? CALL FOR NOMINATIONS – As a community, a lot has changed: more gluten-free products on the shelves, more people aware of celiac disease and gluten sensitivity, more CCA BOARD OF DIRECTORS gluten-free options at restaurants and now more than ever we are on the horizon of a potential drug therapies and breakthroughs. We still have The Canadian Celiac Association (CCA) is seeking nominations for its national board of directors for the much to do, though. People are still getting ill from cross-contact, ‘may July 1, 2020 to June 30, 2022 term. contain’ statements are on way too many labels and Ontario still hasn’t joined the rest of the country on diagnosis coverage. Nominations Close: March 6, 2020 For the CCA national volunteer board, the year 2020 means drafting a Who are we? Since 1972, the Canadian Celiac Association (CCA), a national not-for-profit charity, has been the new vision for the organization and strategic plans to address the chal- national voice for people who are adversely affected by gluten, and is dedicated to improving diagnosis and lenges you and they as individuals who also have the disease or a rela- quality of life. In addition to a small national office located in Mississauga, Ontario, CCA is backed by support tive, still face. The plan, which you’ll see in the coming months, arrives as the organization moves this year groups and chapters across Canada serving members locally. away from traditional membership—a challenge for many non-profits, not just CCA — to serving the broader gluten-free community at large. It will allow all of us to come together to advocate for better precautionary Our Vision: The Gluten Solution – Find, Treat, Cure. labelling, review tax policy and blood testing coverage, support research and Canadian trials, offer more education and create more awareness. Our Values: Science based, integrity and compassion This edition of Canadian Celiac showcases just some of the broad-scale work that has and is being accom- Is this role for me? plished thanks to the incredible support received from individual like you. Take for instance the update on • Are you passionate about helping people impacted by celiac disease, dermatitis herpetiformis or non-celi the ‘Doggie Bag’ study which was supported by a CCA JA Campbell grant, and the guidance on cosmet- ac gluten sensitivity? ics and gluten free from our hard-working Professional Advisory Council members, who source the latest • Do you want to be involved in making decisions that could help improve their lives? research to help empower your decision-making. Working together, we can bring together people like Dr. • Do you want to grow your professional and personal skills and network in board governance, strategic Mohsin Rashid, a Halifax gastroenterologist and long-time volunteer, to provide reviews for all of us on the thinking, problem solving, financial oversight and issues management? latest advice on how to manage celiac disease after diagnosis. We need you to be ready to: CCA is seeing people like Léa Saad and Drew Flemming. Léa is a young woman who was diagnosed in high • Read and review all meeting materials in advance. school, who turned to the community for support and now gives back sharing her story on navigating dating • Participate on bi-monthly board meeting calls which average two hours in length and attend up to three and a social life in this column and on her very own blog. Drew is a young hockey player who’s growing up weekend in-person meetings per year, one of which is CCA’s Annual General Meeting. celiac but not letting it stand in the way of his dreams. • Actively participate in all strategic and financial discussions and issues impacting CCA • Evaluate the role and performance of the Executive Director CCA is you, and when you support CCA, you are making an investment in yourself and paying it forward to • Respect final decisions of the board and adhere to board confidentiality and privacy change the landscape, make improvements and help others who share a similar journey. In the short three • Participate on one board standing committee: Executive, Governance, or Finance/Audit which may involve years that I have been with you, I have seen an incredible growth and energy and I can’t wait to see what another one to two hours per month you do over the next 10 years. Are you the candidate for us? Respectfully yours, • Candidates should have at least five years of work experience. • Volunteer experience especially in the not for profit sector or previous board service is an asset. • Preference will be given to individuals who have a background in the following area: fundraising/grant writing, agri-food or food production. • Some knowledge of celiac disease, gluten sensitivity or dermatitis herpetiformis is an asset but not required. Melissa Secord Executive Director Interested? Visit https://www.celiac.ca/get-involved/nominations/ Applicants need to submit the Board Nomination form, along with a cover note and resume by March 6, 2020. 4 | Canadian CELIAC Canadian CELIAC | 5
Managing your celiac It’s crunch time! Switch to a tastier, healthier FOLLOWING UP You’ve been diagnosed with celiac and you’re on a GF diet. Do you need to continue seeing a gastroenterologist? alternative to bread. PHOTO FROM BING IMAGES LÉA SAAD Celiac disease (CD) is a chronic autoimmune disorder in which ingestion of gluten (a protein present in wheat, rye and barley) causes damage to the lining of the small intestine in genetically susceptible individ- uals. It is a common disorder affecting about 1% of the population. The treatment of CD is a strict life-long gluten-free diet. Follow-up of patients with CD is important. The recommendation regarding follow-up can vary depending on the clinical condition of the patient and the resources available locally. BY DR. MOHSIN RASHID endoscopic small intestinal biop- should also include an assess- Made with High in fibre Vegetarian sies performed by a gastroenter- ment by a dietitian. After that, pa- wholegrain oats Q How often do I go back to my ologist. It is recommended that tients are usually seen yearly. For gastroenterologist? Do I ever patients goes back to see their adults, if you’re doing well, your need to? gastroenterologist in follow up gastroenterologist may determine A In the majority of cases, the three to four months after start- diagnosis of CD is confirmed with ing the gluten-free diet. This visit Continued on next page Discover the range at WWW.NAIRNS-OATCAKES.COM/WORLDWIDE-EXPORT/NAIRNS-CANADA Canadian CELIAC | 7
CD can negatively impact growth and development. Therefore, follow up of toddlers ... is more frequent ... oats Continued from page 7 mal initially. These general guide- in gluten-free diet is essential. The lines apply to patients of all ages. first year or so after diagnosis can that follow-up can be provided by be challenging, as one gets used your family physician. Pediatric pa- What is tested depends on the to the diet. tients, on the other hand, are fol- clinical condition of the patient. sweet oats. lowed by their gastroenterologists The years of symptoms before Q Do things change if I have generally on a yearly basis. Young diagnosis may not have any another autoimmune disease or children are seen more often. significant impact. What’s import- chronic condition? ant is how severely a patient was A Celiac disease is an autoim- Q Can my family doctor manage affected at diagnosis. mune disorder and patients are my disease? at risk of developing a second (or A This depends on the family Q How does the ongoing man- third) autoimmune disorder. The doctor’s experience and knowl- agement of celiac disease differ most common of this is thyroid edge of CD. For patients who are at different ages and stages disease, for which patients are Bring home a tastier, healthier snack. stable, a family physician should be able to provide effective on- of life? A The gluten-free diet is effective monitored. A strict gluten-free diet is helpful but does not take away going care. (The website of the for all ages. One thing that distin- the risk of developing other auto- Canadian Celiac Association has guishes children is their growth, immune disorders completely. some excellent resources for phy- as CD can negatively impact sicians on this issue.) growth and development. There- To summarize: Regular follow-up fore, follow up of toddlers and of patients with celiac disease is Q Are there any ongoing medi- young children is more frequent important. The annual follow-up cal tests I should be having? and should be provided by a should consist of a detailed his- A The celiac serology (TTG an- pediatric gastroenterologist. For tory, review of gluten-free diet tibody blood test), which is ab- adults, the overall principles of adherence, complete physical normal at diagnosis, is generally management/follow-up remain examination including growth mea- repeated about a year or so after similar, irrespective of age. surements (weight, height, body being on a gluten-free diet. The mass index), and checking the TTG test will eventually become nega- Q What about people who are antibody and thyroid function. u tive, although it may take longer in newly diagnosed? What should some patients depending on how they expect as far as follow up? Written by Dr. Mohsin Rashid MD, MEd, abnormal it was at the beginning. A A strict gluten-free diet is highly AGAF, FRCP(C), Education Committee, Other ongoing tests for nutritional effective in resolving symptoms Canadian Celiac Association; Profes- assessment (iron, vitamin D, etc.) and healing the intestine. Coun- sor of Pediatrics (Gastroenterology & are repeated if they were abnor- selling by a dietitian with expertise Nutrition), Dalhousie University. Nairn’s know a thing or two about oats. We’ve been baking with them since 1896 and they are the main ingredient in everything we make. Whilst our product range has changed a lot since our humble beginnings, our commitment to making simple, natural and wholesome products that taste great is as import- Made with Source of Gluten free ant now as it was back then. wholegrain oats fibre Oats have become something of a superfood in recent times. Nairn’s diverse oat- based range now includes oatcakes, sweet biscuits, crackers and flatbreads and Discover the range at Baked we are continually launching new products to meet consumers needs for tasty and in Scotland. nutritious healthy snacks. WWW.NAIRNS-OATCAKES.COM/WORLDWIDE-EXPORT/NAIRNS-CANADA
May we help you? Gluten free superfood PRECAUTIONARY LABELLING GUIDANCE made super simple Bursting with vitamins and nutrients wholegrain oats (like the ones we use in Watch for an announcement on label reading including may contains from CCA in a few weeks. After consul- tations with Health Canada and extensive research from a team of dietitians from across Canada, a guidance document has been developed. CCA conducted a consumer survey last May and confirmed the confusion of product labels with precaution- our flatbreads) always make for a great snack. This recipe is so simple to make, ary statements. you may never go back to sandwiches again… CCA has been working with Health Canada and other allied stakeholders to improve food ingredient labels and to require manufacturers to stop over-labelling where there is no risk to the gluten-free consumer and Roasted Squash & Carrot Spread provide more verification of when statements are used. Ingredients Webinar Recording Available: Request to receive a recording of CCA Professional Advisory Council mem- ber and registered dietitian, Shelley Case’s webinar on Navigating Labels by clicking here. 1kg butternut squash, cubed 4 carrots, chopped 1 large red onion, quartered 3 garlic cloves STAKE YOUR CLAIM! CELIAC AND MEDICAL CLAIMS 1 tsp oregano Olive oil Salt & pepper Your favorite Nairn’s Flatbreads CCA has developed in conjunction with Revenue Canada tax volunteer, Lynda Marie Neilson, a series of tools and resources to help individuals who wish to claim for the incremental cost of gluten-free products. A webinar recording, handouts and sample spreadsheet are available by request using this link: https://www. celiac.ca/news-events/events/ UPCOMING EVENTS Instructions Preheat your oven to 390°F. Add the squash, chopped carrots, red onion, garlic, oregano into a large GF 101: Navigating the gluten-free diet webinars baking tray and drizzle with olive oil Join CCA Registered Dietitian Gauri Bawa for our one-hour FREE webinar on how to navigate the gluten-free and sprinkle a large pinch of salt and diet. Perfect for individuals or caregivers of people who are newly diagnosed. pepper. Place in the oven for 35-40 Date: Wednesday, February 19 minutes until it browns. Put all the Time: 9 – 10 pm Eastern ingredients in a blender and pulse Click here to register until desired consistency. Top your Nairn’s Flatbreads and enjoy! CCA National Conference Date: June 5-7, 2020 Doubletree Hilton Hotel, Regina See pagee 42-43 Discover the range at WWW.NAIRNS-OATCAKES.COM/WORLDWIDE-EXPORT/NAIRNS-CANADA Canadian CELIAC | 11
N 17 e, ial Growing up CELIAC y n M ING d s or, O a y 20 H o cke r d i visio i n ger Le Pag rovinc Wi n ith M : o AA w l P r FLE M se: ort ds ht oya ey, ale W 1 0 : 5 e t o wn: o s ed w disea r i t e sp e : Win tfires A o n : Rig s o r s: R l Hock ler De E : d e n a c u g u p i it i n e y s DR Age Gra Hom Diag celi Fav o Lea Jr. S Pos Spo Diez Chr HE SHOOTS, HE SCORES! Drew Flemming won’t let anything stand in the way of his ambitious hockey dreams — not even celiac disease BY RONNILYN PUSTIL At age five, when many kids haven’t learned how to ice skate yet, Drew Flemming was al- ready playing hockey in a house league. Two years ago, as an eight-year-old in the AA division, he scored more than 60 goals, by far the highest on his team. To- day, he plays for the Windsor Jr. Spitfires AAA Zone—the highest level of hockey for someone his age—and is the third-highest goal ey because of it. He just kind of kind of like a whole team thing,” figure something out. “One time anymore when I go on the ice, so scorer on his team. fought through it.” Lindsay says. Because they’re the team went a restaurant that I can focus more on hockey and together so often—as frequent- couldn’t accommodate Drew, but skills.” His mom agrees: “Since “Drew is very competitive and Finally, in May 2017, the Flem- ly as six times a week, thanks there was a Boston Pizza next going gluten free, Drew is stron- very determined,” says his mom, mings got an answer to all of to practices, games and travel door, so we ordered him pasta ger, both in his body and mentally Lindsay. “He wants to win and Drew’s mysterious symptoms time—“we’re kind of like a big from there and brought it into the at school. He’s a very athletic boy goes out and tries his best. He’s when he was diagnosed with family.” Food plays a big part in restaurant and they were fine with and just knowing that he’s thriv- always drawing plays on his celiac disease. He also had very their hockey lives, whether they’re it. This way he still feels part of the ing and growing with celiac is our hockey white board and is always low levels of iron, a symptom that celebrating someone’s birthday or team and not left out.” main goal.” playing road hockey or shooting often accompanies a celiac diag- eating out on the road. “The other pucks in the driveway. He watch- nosis and explains the darkness parents have been so awesome in Still, Drew sometimes struggles Drew has another goal in mind. es hockey on TV and checks all around his eyes. accommodating Drew,” says Lind- with having to be gluten free: “It Though he’s a huge Leafs fan, he the scores and stats on his TSN say. “They’ll pick up gluten-free sucks,” he admits. “I want to be would love to meet his role model, app every morning before school. The diagnosis offered clarity, but pizza for him for birthday parties. able to eat what everyone else Montreal Canadiens player Max He just loves the game.” also represented a challenge. “It They’re all aware and ask ques- does and it’s not fair. When I go to Domi. Drew has read Domi’s mem- was a big learning curve when he tions about how to prepare food my friends’ houses, I worry about oir No Days Off, which chronicles Drew loves hockey so much was first diagnosed,” Lindsay says. and avoid cross-contamination.” the food that they have, or I bring his life as a kid with type 1 diabetes that, even when he started com- “The Canadian Celiac Association my own snacks. Sometimes I get and his journey to the NHL. They plaining of stomach aches at age Facebook page was so helpful. Being on the road can be tricky. mad that I have it, even though my have a lot in common: They both seven, he kept on playing. Around And a friend whose daughter has When they have to travel for mom and dad try to make it easier come from the same hometown of this time, he was also experienc- celiac disease was also a good a tournament, the Flemmings for me.” Belle River, they both play compet- ing loose stools and headaches, source of information.” bring their own gluten-free food itive hockey and they both have PHOTOS BY RACHEL MITCHELL and was throwing up in the mid- for breakfast and snacks and But despite his young age, he’s celiac disease. And neither seems dle of the night. His parents no- T EA M P L AY ER S have their go-to places where well aware how much being to be letting their illness get in the ticed he was getting dark around they know Drew can eat safe- gluten free has helped him. “Now way of the game. u his eyes.“He was really sluggish, When it came time to let Drew’s ly. When the team goes out for that I’m on a gluten-free diet, I too,” Lindsay recalls. “But I don’t teammates and their families dinner, Drew’s parents check the feel better and have more ener- For top dining out tips think he ever missed any hock- know about his diagnosis, “it was menu ahead of time and try to gy,” he says. “I don’t have cramps https://youtu.be/ec27yP5zkXY Canadian CELIAC | 13
Growing up CELIAC CAMP CONNECTIONS Rod McDaniel Celiac Kid’s Camp is the perfect summer escape for kids who must eat gluten free BY THE CALGARY “The camp is extremely popu- CHAPTER, CANADIAN lar; always selling out and many CELIAC ASSOCIATION children returning year after year,” says Calgary Chapter president Jim Calverley. “This is a true As kids get older and you’re success story for the children, planning their summer, the idea the community and the Calgary of sleep-away camp may come Chapter.” up. Sleepover camp offers many benefits to kids—it increases their Camp Horizon has committed to confidence and independence, a safe environment by complet- and offers new experiences and ing the GFFP certification prior to connections with other kids. But each camp. The chef ensures that unfortunately for kids with celi- meals and snacks are gluten free, ac disease, many camps cannot and other special diet needs are accommodate a child’s strict met. There is also a registered gluten-free diet. nurse on site. Since 1995, the Calgary Chapter The program is unique in that of the CCA has partnered with everyone has a choice of the camp in Southern Alberta to activities in which they want to provide a gluten-free camping ex- participate. The day begins when perience for children with celiac the campers emerge from the disease. bunk houses they share with other girls or boys of similar age From the original two-day day and proceed to the grand dining camp with 12 campers to our cabin for 8:30 breakfast. Morning current five-day overnight event, activities begin at 10, and there it has evolved and grown into an are numerous choices including annual camp for children from swimming, biking, high ropes, ages 7 to 17. Over the years, archery, giant swing, ball games, both awareness and attendance arts and crafts and more. Offsite has grown, and today, kids come activities include whitewater raft- from all over Alberta, and many ing, wilderness survival, overnight return each year. This August, outdoor campouts and day hikes. the camp—which is held in After lunch, there is a rest period partnership with Easter Seals at followed by more great activities Camp Horizon, wonderful moun- until dinner at 5:30. The evening tainous location in the heart of usually involves team games like Kananaskis Country—anticipates more than 80 kids will attend. Continued on next page PHOTOS BY CALGARY CHAPTER, CCA 14 | Canadian CELIAC
I make friends every year that understand the struggles of having celiac disease. It is also so great to go to a camp where I don’t have to worry about food ... It is such an amazing thing not to be the odd one out for once. Continued from page 14 ute to helpus keep the cost of the camp as low as possible. capture the flag, kart races, and treasure hunts. At dusk campers Kids who attend typically have gather for a campfire and s’mores high praise for the camp. “This before heading to their bunks. was my seventh year coming to celiac camp,” said Sydney, age The last night of camp is espe- 15, in a note to the camp written cially memorable. This is when last summer. “I make new friends the campers and counsellors every year that understand the get their glitz on and celebrate struggles of having celiac dis- with a special farewell banquet ease. These friends have shared and dance. experiences with me at camp that we will never forget. It is also Registration fees are subsidized so great to go to a camp where through the generosity of some of I don’t have to worry about food our chapter members and fundrais- and where being gluten free is ing events like the Scotiabank mar- normal. It is such an amazing athon. Also, many donors, sponsors thing not to be the odd one out and the Edmonton Chapter contrib- for once.” u 16 | Canadian CELIAC
When to intoduce gluten to babies? BABY BITES that we offer whole grain glu- ten-containing foods or fermented gluten products (like sourdough), along with an anti-inflammatory Do not put your your health care provider about the best approach for your family. My primary area of research is diet (think whole foods based diet child on coping with celiac disease, so What’s the best way to introduce gluten to a baby rich in vegetables, fruit, protein, please don’t let gluten introduc- a gluten-free diet who’s at risk of developing celiac disease? healthy fats, iron and low in pro- cessed foods and sugar). Overall, tion be a cause of stress! I do not get caught up in measur- we aim to offer a small amount of before testing for ing food and if we are out and no differences in development of celiac disease between early and gluten to my young boys at two to three meals per week, which on celiac disease or my sons have something with a larger amount of gluten or late gluten introduction. average equals out to about two consulting with processed foods, I take a deep grams or less per day. breath and make a mental note Researchers have also been ex- your pediatrician, to offer less gluten over the fol- ploring how the amount of gluten Most importantly: Do not put your lowing week or two. We are all in an infant’s diet may impact child on a gluten-free diet be- as this can result in doing the best that we can do. development of celiac disease. In fore testing for celiac disease or Aiming to offer a whole foods- 2019, results from a prospective, consulting with your pediatrician, false negative test based diet in your home will large-scale study revealed that a as this can result in false negative allow you to be more relaxed higher level of gluten consump- test results. Make sure to watch results when dining out and you have tion over the first five years of life for symptoms of celiac disease less control over the food your was an independent risk factor and ensure that you speak with child consumes. u for celiac disease. Genetically at- risk children who consumed only two grams per day or less over the first five years of life had the lowest rates of celiac disease au- toimmunity and celiac disease. Ac- BY JUSTINE DOWD, PHD high risk infants (i.e., those with cording to Andrea Hardy of Ignite POSTDOCTORAL FELLOW, a first degree relative diagnosed Nutrition, two grams is equivalent UNIVERSITY OF CALGARY with celiac disease). While find- to about half a cup of whole wheat ings from several studies suggest pasta, half an English muffin or As a diagnosed celiac and mom that breastfeeding may offer some half a cup of wheat-based cereal. of two young boys, I have been protective effects for infants at Generally speaking, one serving eagerly following the research on high risk of celiac disease, results of a wheat-based food is equiva- how feeding practices influence of a systematic review indicate lent to two to four grams of gluten. the development of celiac disease that breastfeeding does not offer among infants at high risk of the any protective effects against the So what do these recommenda- disease. development of celiac disease. tions actually look like in everyday Results of other studies suggest life with a baby? Over the past 20 years, research- that timing of gluten introduction ers have been examining the (i.e., before or after four to six Through discussions with our pe- months of age) may affect the diatrician, we decided to introduce PIXABAY PHOTO effects of breastfeeding, timing of gluten introduction and quantity of development of celiac disease, a small amount of gluten at five to gluten introduced, on the risk of however, authors of a systematic six months of age. When we offer developing celiac disease among review concluded that there were gluten, we do our best to ensure 16 | Canadian CELIAC
Fibre tip sheet SPOTLIGHT ON FIBRE RICH GLUTEN-FREE FOODS GRAINS DIETARY FIBRE Food Fibre (grams) 1 cup of Almond Flour .................................................... 11 1 cup of Corn Bran .......................................................... 60 1 cup Soy Flour .................................................................8 1 cup of Quinoa ................................................................5 How regular are you? It’s not something you would ask someone at a dinner party but it’s an important 1 cup of Steel-Cut Oats .................................................. 6 question to ask yourself. Canadians in general often don’t get enough fibre in their daily diets. For some- 1 cup of Brown Rice (long grain) ..................................3 one required to be on a gluten-free diet, getting enough fibre in the diet can be more of a challenge. Fibre, a type of carbohydrate, is part of all plant foods that the body cannot digest or absorb. It is some- times called roughage or bulk. FRUIT Food Fibre (grams) 1 cup of Raspberries or Blackberries ......................... 8 TWO TYPES OF FIBRE HOW MUCH FIBRE DO ADULTS NEED? 1 medium Pear ..................................................................6 1 medium Apple ...............................................................4 Age Aim for an intake of grams/day Insoluble-promotes regularity and 1 medium Banana ............................................................3 Men 19-50 ...................................................................................................... 38 a healthy digestive system Men 51 and older ......................................................................................... 30 E.g., wheat bran, whole grains Women 19-50 ............................................................................................... 25 Women 51 and older ................................................................................... 21 V E G E TA B L E S Soluble-helps lower blood cho- Breastfeeding Women 19 and older......................................................... 29 Food Fibre (grams) Pregnant Women 19 and older ................................................................. 28 lesterol and control blood sugar 1 cup of Acorn Squash ................................................... 9 levels, slows digestion and ab- 1 medium Baked Potato with skin ............................... 4 1 cup cooked Broccoli ....................................................5 sorption of foods 1 cup cooked Spinach ....................................................4 HOW MUCH FIBRE DOES MY CHILDREN NEED? E.g., oranges, oats, psyllium Age Aim for an intake of grams/day GLUTEN-FREE DIET AND FIBRE Boys and Girls 1-3 ......................................................................................... 19 Boys and Girls 4-8 ........................................................................................ 25 LEGUMES Boys 9-13 .........................................................................................................31 Food Fibre (grams) Gluten-free diets can often be Girls 9-13 ......................................................................................................... 26 1 cup of Navy Beans .......................................................19 low in dietary fibre because many Boys 14-18 ....................................................................................................... 38 1 cup of Black Beans ...................................................... 15 whole grains contain gluten. Girls 14-18 ........................................................................................................26 1 cup of Lentils ..................................................................16 *There is no upper limit for fibre intake 1 cup of Chickpeas 13 Remember to: Read labels for gluten-free products and try to NUTS AND SEEDS choose foods with more than 4g of fibre per serving. Contact your Food Fibre (grams) physician or dietitian for further information. 1 tablespoon of Chia Seeds ..........................................3.7 ¼ cup of Almonds (whole with skins) .........................3.8 Additional tips: Increase fibre intake gradually. 1 tablespoon of Sesame Seeds ................................... 1 Starting with a small amount can help prevent abdominal cramps and gas. Drink more fluids each day as you increase fibre. 18 | Canadian CELIAC Canadian CELIAC | 19
My celiac journey DATING AND REL ATIONSHIPS MY CELIAC STORY If you’re dating How young bring this up?” I’d wonder. “Will someone who isn’t I also made sure to educate my they find it weird that I’m asking boyfriend on the condition. If professional them to brush their teeth after celiac, likely you’re dating someone who isn’t having a beer?” So many anxious celiac, likely they will be con- Léa Saad thoughts ran through my head, they will be suming products that may not and I was afraid my condition be gluten free. The best way my navigates life with would steer people away or that consuming boyfriend and I have navigated they would think I was crazy for this is by carrying a travel size celiac disease making these odd requests. products that may toothbrush. If Nick decides to have a beer, or eat a gluten-con- BY LÉA SAAD Eventually, like everyone facing a not be gluten free. taining dish, he washes his hands celiac diagnosis, I had to get out and brushes his teeth afterwards. of my own head and face it—and The best way my We find this helps with preventing I was 16, in my junior year of high I’ve learned a lot along the way. potential risk of cross contamina- school, when the stomach aches I’m often asked how I navigate boyfriend and I tion. Even though the risk is very started. “It’s mild stomach pain, social situations. minimal, it allows us to both enjoy sure it’ll go away,” I remember have navigated the things we love. thinking. I was wrong. I struggled To that I’d say: It might be hard with stomach aches for three in the beginning because friends this is by carrying My last tip would be to empow- years and had countless doctor and family may not understand er yourself. Take charge of your visits before finally getting my the extent of your condition, but a travel size health. When I was first diag- celiac disease diagnosis in the just keep advocating for yourself nosed, I started my blog, www. summer of 2014. and help them understand. Print toothbrush theceleaccorner.com and I started off information sheets from the sharing my gluten-free lifestyle. I Today, six years later, I am a young Canadian Celiac Association’s When navigating social situa- share product finds, restaurants, professional living in Toronto trying website and share it with them. tions, your best bet is to educate and recipes. I also share them on to navigate her 20’s living with Educate them on foods you can yourself! Spend some time doing my Instagram page. Sharing my celiac disease. or can’t have. I would also sug- some research on where you can journey on Instagram has em- gest connecting with others who eat, what you can eat, experi- powered me in so many ways. It Living with an autoimmune condi- also live with celiac disease to ment in the kitchen, and share has connected me with so many tion definitely has its challenges, avoid feeling alone. I have done this information with others! fellow celiacs. This has led me especially one like CD where your so by joining the CCA’s Facebook to believe that I was meant to immune response is triggered by a group. This is a great place to I put together a list of restaurants share my story in order to help ubiquitous ingredient. Post diag- seek support from others who are I could safely eat at. Whenever others. So do not be afraid to nosis, I definitely worried about living with the same condition as my friends or boyfriend want share yours—you never know going out with friends. I would you, and to connect with peo- to go out, I always make sure who’s life you may be impacting. think to myself, “Will they under- ple who understand what you’re to recommend a restaurant off Need some extra support on your PHOTO BY LÉA SAAD stand cross-contamination? Will going through. I found this crucial my list. If I’m going to a friend’s journey? You can find me at @ they be ok with me bringing my in my journey since I am the only house, I always bring a dish or leasaad on Instagram or email me own dish?” I also worried about one diagnosed in my circle of fam- dessert to share and nobody at leasaad@theceleaccorner to dating. “How and when should I ily and friends. ever complains. connect. u 20 | Canadian CELIAC Canadian CELIAC | 21
Ask the expert KISSING AND MAKEUP SEALED WITH A KISS THE MAKE-UP ucts are not available in Canada, some were from large companies that also supply products in Cana- OF MAKEUP da. In dental tablets, mouthwashes and lip-balms, the gluten level was Can you get ‘glutened’ by smooching minutes then waiting 30 minutes, within limits not expected to cause or waiting 60 minutes. All partic- problems in CD (ranging from someone who just ate gluten? ipants had undetectable peanut undetectable to 12.2 ppm). Thus after eating a peanut-free meal 94% of the products tested can be An expert weighs in (up to five hours after eating Some personal care products may considered gluten-free and safe the peanut butter sandwich). contain a bit of gluten. Here’s why to use by celiac patient. However, four products (three toothpastes BY D R. JOCELYN SILVESTER These studies suggest that pea- experts say it’s no cause for concern and one lipstick) showed a gluten nut allergen is present in small level over > 20 ppm (maximum 35 Q I have celiac disease, but my amounts for a limited time after ppm in one toothpaste brand). partner doesn’t. Is it safe for me eating a food containing peanuts. BY THE CCA PROFESSIONAL products to cause the intestinal to kiss him after he’s consumed Case reports of allergic reactions ADVISORY COUNCIL damage? A smaller US study from 2012 food with gluten? after kissing identify the tested four lip products and two sensitivity of the patient and A small handful of studies have body/face lotions. In this study, the A Patients ask this question a lot. Gluten in personal care products, “passionate” kissing as risk looked at the gluten content in products were specifically chosen To accurately answer it, doctors toiletries and cosmetics is a com- factors. these personal care products. A for testing as they contained at would need to know how much mon concern among patients with gluten is in saliva after eating celiac disease and other gluten-re- 2019 study out of Italy tested 66 least one ingredient derived from How can we extrapolate these oral hygiene products and cos- gluten or oats (as they are contam- gluten. Unfortunately, this is one conducted a study to see how lated disorders. As these products results to celiac disease? Fortu- metics, even though none of the inated with gluten). There was no of many practical questions which long peanut can be detected are applied around or sometimes nately, people with celiac ingredients in these products came quantifiable gluten found in any of has not been well-studied. How- in saliva. Adults and adolescents inside the mouth, there is a con- disease don’t get anaphylactic from wheat, barley or rye. The re- these six products. ever, while specific data on gluten (without peanut allergy and on cern for gluten ingestion. A small reactions to gluten. Also, al- searchers studied 36 toothpastes, is not available, we can learn from a peanut-free diet for the study) amount of these products may be though the amount of gluten two dental tablets, five mouthwash- the experiences of people with se- ate two tablespoons of peanut accidentally swallowed, especially Overall, the evidence suggests that transferred through kissing may es, 10 lip balms, and 13 lipsticks, vere (anaphylactic) food allergies. butter in a sandwich and lipsticks, lip balms and toothpastes. it would be rare for enough gluten vary, it is unlikely to be a signifi- all selected due to their popularity collected serial saliva samples. Gluten absorption through the skin to be absorbed into the intestine cant amount. Parts per million is in Italian stores and pharmacies. Local symptoms (for example, After five minutes, a peanut has not been proven to be toxic for following exposure from cosmetics, a concentration, so there is more Though many of these exact prod- hives and mouth swelling) after allergen was detectable in saliva patients with celiac disease (CD) shampoo, other toiletries and skin gluten in a 3 oz (90 g) kissing somebody who has eaten from 30 out of 36 (83%) partic- as it cannot cross from the skin care products. The vast majority of slice of cake with 5 ppm gluten a food they are allergic to was ipants. The amount of peanut blood vessels into the intestines. It products have a negligible amount than a teaspoon (5 mL) of saliva spontaneously reported by 5% allergen ranged from 0.07 to is possible that some gluten may of gluten and given the small with 50 ppm gluten. Therefore, it of respondents to one survey 35 ppm (parts per million). The be ingested if the person does not amounts (if any) normally ingest- is safe to say that it’s very unlike- and 12% of respondents to anoth- researchers also tested how to wash their hands after touching ed, gluten contamination in oral ly that kissing results in signifi- er survey that asked the question clean the allergen from products prior to eating. In order hygiene and cosmetic products is cant gluten exposure for most directly. These individuals re- the mouth. for gluten to cause damage in unlikely an issue for patients with individuals. u ported symptoms within minutes people with CD, sufficient amounts celiac disease. A further advance of kissing an individual who had Many different methods were Thanks to this issue’s expert, of gluten must be swallowed and has been the decision by many eaten the food minutes to a few found to substantially reduce pass into the small intestine where manufacturers to indicate that their FREEPNGING PHOTO Dr. Jocelyn Silvester, Attending hours earlier. the amount of peanut allergen Physician, Division of Gastroenterolo- it causes damage. products, such as toothpaste and present, including brushing teeth gy, Hepatology and Nutrition, mouth rinses, are gluten free, pro- Researchers at the Mount Sinai only, brushing teeth and rinsing, Instructor of Pediatrics, Harvard The question is: Can enough glu- viding additional reassurance for School of Medicine in New York rinsing only, chewing gum for 30 Medical School. ten be absorbed from any of these patients with celiac disease. u 22 | Canadian CELIAC Canadian CELIAC | 23
The Gluten- Free Certification Program features bakery Known for its delicious breads, Little Northern Bakehouse is certified 100% gluten free. PHOTO BY LITTLE NORTHERN BAKEHOUSE BREAD WINNER Chia Hot Dog Buns of the program, Little Northern allergy-friendly foods products. z Artisan Pizza Crusts: Original Bakehouse products are regular- Some of our latest innovations Artisan, Thin Artisan ly tested at the bakery by a third have been exceptionally well-re- z Bagels: Plain, Everything, Cinna- party to make sure the product is ceived. For our new line of ba- mon Raisin, Blueberry fully gluten free. gels, we crafted a gluten-free bagel that proudly lives up to our Q When did Little Northern Bake- everyone can really enjoy. Our most popular products are the Q What’s unique about your Q Where can customers find commitment to giving you baked house get its start? Seeds & Grains classic loaf and products? Little Northern Bakehouse prod- goods that aren’t just good for A Little Northern Bakehouse was While the founders do not have Whole Grain Wide Slide loaf for A They taste like the real thing. ucts? gluten free, they’re good, peri- created in 2015 to offer great tast- celiac, their priority is to provide their added nutrition and fibre pro- Everything is gluten free, non- A Little Northern Bakehouse od. We are also excited for our ing bread and bakery products ev- healthy and honest eating choic- vided by a delicious array of whole GMO and made with plant-based products are found at national new artisan-style pizza crusts eryone can enjoy, especially those es, that are still delicious, for every grains and seeds. The Whole Grain ingredients to create truly deli- grocery stores, Costco, health- that deliver a delicious choice of with food sensitivities. At our core, person to enjoy. Wide Slice is especially popular for cious and soft baked goods. food stores, and local natural subtle, doughy original, or crisp, we’re a bakery before we’re a sandwich-making. co-ops throughout Canada and thin-crust. gluten-free bakery—a bakery who Q What products do you offer, Q Why did you become certified? the U.S. Find them in the freezer believes in sharing the joy of ex- and what’s your most popular For the complete Little Northern Why the Gluten Free Certifica- section of many stores. Gluten-free and wheat-sensitive ceptionally delicious baked goods item? Bakehouse portfolio: tion Program? diets are becoming increasingly with everyone. That dedication A Little Northern Bakehouse z Classic Loaves: Seeds & Grains, A It is very important to Little To find the store closest to you, use common, with more food sensi- extends to all aspects of how we offers a variety of delicious, Cinnamon & Raisin, Millet & Chia Northern Bakehouse to provide the store finder on our website. tivities and allergies than ever make our products so we only use gluten-free and allergy-friend- z Wide Slide Loaves: Whole Grain products our consumers can enjoy before. We hope to continue filling non-GMO and plant-based ingre- ly breads and bakery products Wide Slide, White Wide Slice and feel safe eating and serving Q Where do you see as the fu- any food voids people have with dients without any eggs or dairy. including classic loaves, wide slice z Sprouted Loaves: Sprouted 7 to friends and family. The on-pack ture of gluten-free products? delicious products everyone can In addition, Little Northern Bake- loaves, sprouted loaves, original Grain, Sprouted Honey Oat GFCP seals give our consumers A Little Northern Bakehouse enjoy. house products are free of the top buns, artisan pizza crusts, and z Original Buns: Millet & Chia the confidence and peace of mind hopes to continue innovating and nine allergens, making it a product bagels. Buns, Classic Dinner Rolls, Millet & our products are safe. As part offering consumers delicious, littlenorthernbakehouse.com 24 | Canadian CELIAC Canadian CELIAC | 25
The GFFP certifies bistro A FINE TREAT eastern European influence with the tastes of Poland, Germany, Hungary, and Austria. You’ll find dishes such as Pero- Offering traditional central and eastern gies (varieties include traditional cheese and potato, cabbage and European menu items, Continental Treat wild mushroom, and spinach and gruyere cheese), Mom’s famous Fine Bistro is also fully gluten free GERMAN PICKLED Dill Pickle Soup, Pork and Chicken Schnitzel, and many more. Restau- rant staff are known for making Located in Edmonton, Continen- tal Treat Fine Bistro is certified GF-Dedicated by the Gluten-Free Continental Treat Fine Bistro has become a premier choice for anniversaries, birthdays, romantic every visitor feel welcome, and every occasion a special one. VEGETABLE BEEF SOUP Food Program. It specializes in dinners, small weddings, and busi- You may be wondering why Con- traditional Germanic and Eastern ness dinners. tinental Treat Fine Bistro offers a This recipe has been handed cloves of fresh garlic (minced) cloth, make a ball the size of a European dishes, but with a mod- fully gluten-free kitchen. Say the down for generations! season with salt and pepper. Add golf ball of pickling spice and tie ern touch. Visitors enjoy warm European bis- owners: “After discovering that ¾ of a cup of quinoa or similar GF closed. Add fresh dill and vine- tro charm with classical jazz music some of our staff were gluten To Make the Stock grain. Simmer for 3-4 hours. gar and parsley. Add vegetable A family affair, three genera- playing in the background. sensitive, we tweaked some of z In a large stock pot combine z Scoop out all vegetables and bullion only to taste. Simmer 2-3 tions of the Borówka family work our recipes to be gluten-free, and water, 6 large beef soup bones discard. hours. together to bring their romantic, Executive Chef Elizabeth Pal- decided, why not go 100%? The and 4 beef shanks. You can also z After an hour remove soup turn-of-the-century dining vision mowski and her team are con- rest was history.” use 6 beef short ribs instead To Make the Soup bones and shanks or ribs and PHOTOS CONTRIBUTED to life. Proud to serve since 1982, stantly working to innovate the z Heat but do not boil. Skim z Now prepare new onions, car- remove meat. Add meat to the owners Ryszard and Helena menu while keeping the distinc- off froth and let simmer for rots, green beans, cabbage, and soup. Borówka, their son Sylvester, and tive, traditional flavour of our Continental Treat Fine Bistro is 4 hours. celery in bite sized pieces. Add 1 z In the last 30 minutes, remove grandsons Matthew and Michal most popular European dishes. located at 10560 82 Avenue NW in z Add large cut onions, carrots, can of whole tomatoes and 1 can dill and pickling spice and add oversee the restaurant. The menu reflects a central and Edmonton. celery, leeks, 5 bay leaves, 8 of diced tomatoes. Using cheese fresh peas. 26 | Canadian CELIAC Canadian CELIAC | 27
Research GLUTEN FREE? UNINTENTIONAL INGESTION You work hard to ensure your diet is 100% gluten free. But is it? BY DR. DONALD D UERKSEN centration of gluten detected in food varied considerably between The University of Manitoba Celiac four ppm to as high as > 200 ppm Study group recently collaborat- (the mean was 12 ppm). Gluten ed with researchers from Boston was detected in the urine of eight and Spain to determine whether participants (6% of samples) and in individuals with celiac disease on the stool in five participants (11% of a gluten-free diet are exposed to samples). small amounts of gluten. This real-world study demon- To do so, researchers tapped 18 strates that gluten exposure may adults with celiac disease and occur in individuals who are on on a gluten-free diet for two a gluten-free diet and not inten- years who were already a part tionally ingesting gluten. In many of the University of Manitoba cases, a small amount of gluten Celiac Disease Inception cohort. was detected, so the clinical These adults were enrolled in the significance is unclear. Further SHUTTERSTOCK PHOTO “Determination of Gluten Grams research is needed to determine Ingested and Excreted By Adults possible sources, the relationship eating Gluten free” (DOGGIE to symptoms and mucosal recov- BAG) study. ery, and optimal management approaches. Over 10 days, participants saved No intentional gluten exposures a quarter of all of their food, as occurred during this time. This Dr. Donald Duerksen is Associate well as stool and urine samples, study found that 12 out of 18 par- Professor of Medicine, University of which were frozen, then analyzed ticipants had detectable gluten in Manitoba; Chair, CCA Professional for gluten immunogenic peptides. their food, stool or urine. The con- Advisory Council NEW STUDY – NOW RECRUITING! Youth & young adults with celiac disease. If you are between the ages of 12-25 and have been diagnosed with celiac disease you are eligible to participate in this online study. This study is conducted through the School of Health and Exercise Sciences at The University of British Columbia Okanagan campus by Dr. Mary Dedicated to Way of Life! Jung and Dr. Justine Dowd. Please email skylar.l.schmidtke@ubc.ca for more information. Canadian CELIAC | 29
Research GLUTEN EXPOSURE IN SCHOOLS SAFE SCHOOL SUPPLIES z Due to gluten found in pastes, clays and other kids’ craft items, keeping kids safe at school goes beyond lunch and snacks. BY D R. JOCELYN SILVESTER z Gluten-containing dry pasta surfaces, it may be challenging to appears to pose a low risk unless ensure that these occur consis- Further research from Children’s National in Washington D.C. and there is oral exposure. tently. As well, it is important to Boston Children’s Hospital is providing more data regarding the risk of z Gluten-containing wet pasta (e.g. consider the developmental stage gluten exposure in schools. The recently released paper, “A Quantita- sensory tables) tends to adhere of the individual child and how this tive Assessment of Gluten Cross-contact in the School Environment for to hands and other surfaces might affect their exposure risk. Children With Celiac Disease” published ahead of print in the Journal and poses a much higher risk of For example, some children suck of Pediatric Gastroenterology and Nutrition helps to answer common environmental contamination and their thumb or put their hands or questions about how to keep children who require gluten-free diets gluten exposure than dry pasta other objects (including Play-doh) (GFD) safe at school. in their mouth. Gluten-containing flour, powders The authors tested four scenarios where it was thought that gluten and pastes: z Surfaces should be cleaned ad- transfer could be high enough to lead to cross-contact resulting in a equately before a child with celiac z Children with CD (and others gluten-free food having a gluten concentration greater than 20 ppm. disease works in an environment who follow a GFD) should only This threshold was chosen because food containing less than 20 ppm where wheat flour or wet gluten work with gluten-free flours, pow- (less than 0.002 percent gluten) is considered to be “gluten-free” by containing materials have been ders and pastes (such as paper the U.S. Food and Drug Administration and products containing less used. mâché) than 20 ppm gluten can be labelled “gluten-free” in the United States, z Adequate supervision when glu- z In classroom environments, Canada and the European Union. ten containing materials are being there is a risk if gluten flours are used. This risk is related to aero- used in the classroom setting is THE SCENARIOS TESTED WERE: a gluten concentration >20 ppm. detectable for 11/30 participants. Play-doh brand modelling clay is essential. solization of flour, spread of flour The child who did not have any Gluten transfer from the surface wheat-based and contains signifi- dust, residual flour when surfaces z Hand washing is important. Playing with modelling clay: Play- transfer did not like the feel of the occurred more than 70% of the cant amounts of gluten. It should are not cleaned adequately, and z Food should never be eaten if doh contained over 32,000 ppm pasta and had minimal contact. time, even after surfaces were not be eaten or played with by unanticipated contact (e.g., spills, there is visible contamination on gluten, which is nearly as much Playing with dry pasta did not pro- washed. children who may eat the Play- food fights). hands, surfaces or the food itself. as in wheat bread. Even when duce detectable gluten-transfer doh, put their hands in their mouth z Use of gluten-containing liquids children did not wash their hands, This is the first study to examine or engage in other behaviors that (e.g., pancake mix) or wet pastes Clear communication with day- there were no cases of gluten Paper mâché – All 10 children common educational activities put them at risk of ingestion. is a risk for gluten contamina- care or school regarding celiac transfer from hands to a slice of who used paper mâché had a and it provides useful data to z In situations when gluten-free tion because it can be difficult to disease, including the need for a gluten-free bread resulting in a significant amount of residue and help guide assessment of risk of modelling clay is not available and remove all traces of gluten from gluten-free diet and maintenance gluten concentration >20 ppm. transferred high amounts of glu- cross-contact and to advise our children are not at risk of inges- hands and work surfaces. of a safe environment, is crucial. In two cases, bread wiped on the ten to gluten-free bread. patients with celiac disease (CD). tion, play in a supervised setting In addition to these conversations, table surface with visible contami- with scrupulous cleaning of hands It is important to recognize that a formal 504 Plan or Individual nation had gluten levels >20 ppm. Baking project: Thirty children HERE’S WHAT THEY RECOM- and surfaces to remove all visible handwashing and environmental Health Plan (IHP) may be helpful rolled gluten-containing dough MEND BASED ON THE RE- contamination is likely safe. decontamination practices are for the student with celiac disease. PHOTO FROM BING IMAGES Sensory tables with dry and wet and cut-out cookies on a surface SEARCH: highly variable, particularly among pasta: After children played with dusted with gluten-containing Pasta: children and in busy classroom Reprinted with permission from wet pasta in sensory tables, 9/10 flour. After washing hands with Modelling Clay: z Children with CD (and others environments. While thorough Boston Children’s Hospital children had visible contamination water, soap and water or wet z Children with CD (and others who follow a GFD) should use cleaning procedures are effective https://www.ncbi.nlm.nih.gov/ on their hands that transferred wipes, gluten transfer from hands who follow a GFD) should use gluten-free pasta for art and other for removing gluten from most pubmed/31868785 to gluten-free bread resulting in to a slice of gluten-free bread was gluten-free modelling clays. classroom projects 30 | Canadian CELIAC Canadian CELIAC | 31
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