CanadianCELIAC IT'S CELIAC AWARENESS MONTH - SONIA'S STORY: I FELT LIKE I WAS IN A PERSONAL JAIL
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CanadianCELIAC IT’S CELIAC AWARENESS MONTH Plus SONIA’S STORY: I FELT LIKE I WAS IN A PERSONAL JAIL ASK THE EXPERT: NEUROLOGY AM I IRON DEFICIENT? ADVOCATING FOR BETTER GF FLOUR
CCA board of directors Executive CCA National Board of Directors Janet Bolton, President Tamara Close Jennifer Stebbing, Vice President Kathryn Djordjevic Andrew Kotys, Treasurer Doris Foster Wanda Walkden, Secretary Uzair Jalil Lizbeth Wall Melissa Secord, CAE, Carly Willis National Executive Director Contact us Canadian Celiac Association 1450 Meyerside Dr., Suite 503 Mississauga, ON. Canada L5T 2N5 Phone: 905.507.6208 or 800.363.7296 Fax: 905.507.4673 | Email: info@celiac.ca www.celiac.ca Canadian CELIAC A MAGAZINE FOR CANADIANS WITH CELIAC DISEASE AND GLUTEN SENSITIVITY Editorial Board Melissa Secord Gayle Grin, Art Director Nicole Byrom www.gaylegrin.design Julie Greene Contributors Dr. Kimberly Bender Caleigh McAulay Nicole Byrom Melissa Secord Dr. Iain Croall Alyssa Solberg Janet Dalziel Dayna Weiten, RD Sonia Jones Leah Vlasic COVER PHOTO: CINDY HUGHES, MUDDY LOVE PET PHOTOGRAPHY Copyright © 2022 by the Canadian Celiac Association Publication Agreement#40787580 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. 2 | Canadian CELIAC
A magazine for Canadians with celiac disease and gluten sensitivity SPRING 2022 12 SONIA’S CELIAC JOURNEY 5 CCA SHINES A LIGHT ON CELIAC 9 EXPERT: CELIAC AND OUR BRAINS 12 FORTIFICATION REGULATIONS 16 41 LONG-TERM CARE 18 NEWLY FUNDED CELIAC BLOOD TESTS 20 'SAVE ME FOR GLUTEN-FREE' CAMPAIGN 22 RESEARCH ROUNDUP 23 DEAR DIETITIAN 28 RISK FACTORS FOR IRON DEFICIENCY 30 CELEBRATING 10 YEARS, 50 YEARS 32, 44 ACCIDENTAL GLUTEN 33 35 CELIAC AWARENESS MONTH 35 RECIPES 41 IN MY OPINION, JANET DALZIEL 45 VOLUME 6 | ISSUE 2
From the Executive Director SHINING A LIGHT ON CELIAC DISEASE #CouldItBeCeliac Celiac Disease Awareness Month is here. It’s time to don your green ribbons and in- crease awareness for this often misdiagnosed and misunderstood disease. We have come so far in raising awareness about celiac disease, and yet we still have a way to go. Currently, in Canada 85% of people with celiac disease remain undiagnosed and it takes an average of 10 years to achieve this diagnosis. As part of increasing awareness of celiac disease, we are challenging the public and healthcare practitioners by asking, “Could it be celiac disease?”. There are so many symptoms of celiac disease, both classic and atypical, that it often goes undiagnosed. Neurological complications, one of the most serious and frightening of all symptoms, are frequently missed as a sign. During this month’s campaign, we share the astonishing journey of Sonia. Her symp- toms so debilitating at times she couldn’t leave her bed; her doctors thought she was having strokes. If you expe- rience neurological complications, you’ll want to check out our Ask the Expert column with Dr. Iain Croall from the University of Sheffield. He gives us an update on his ongoing work on celiac and brain health. On her journey, Sonia saw just about every “ologist” in the healthcare system. Our awareness efforts continue to challenge Canadians and their healthcare practitioners to have a better understanding of the disease by sparking conversations and challenging their perceptions. To help us close the gap between first symptoms and diagnosis, our registered dietitian Nicole Byrom has started providing free education seminars across Canada for registered dietitians. By increasing understanding within the field of dietetics, we hope to improve diagnosis rates and im- prove how the disease is managed. We are thankful for Sonia willing to share her story in our new public service announcement video which will be shared not only on-line but also on CBC television - a first for the CCA thanks to the support of Promise Gluten Free and generous community donors. Watch here. Join us all month for educational events and celebrations. Join our team on May 16th to celebrate the progress that we have made, and the excitement of the steps we are taking. Let’s shine a light on celiac disease and raise aware- ness of this often-misdiagnosed disease. By talking about celiac disease and breaking down barriers of misinforma- tion, we can increase screening and diagnosis rates. Raise your hand, ask questions, make a donation, be a voice, be an advocate. The CCA is lighting the country green this month to show our support and love for this community. It is because of our generous donors this work can continue so on behalf of our dedicated team and national board of directors, we’d like to thank you for your continued support. Melissa Secord, CAE 4 | Canadian CELIAC
A Celiac Journey Sonia and her lifelines: her hus- band Dustin and their huskies CINDY HUGHES, MUDDY LOVE PET PHOTOGRAPHY HOW YOU SHOULD NEVER GIVE UP ON YOURSELF OR ANSWERS Sonia’s celiac diagnosis was like escaping a personal jail Continued on next page Canadian CELIAC | 5
I was originally misdiagnosed as having had a stroke ... nobody could nail down a diagnosis – Sonia Sonia Jones was very sick, and was not getting better, despite multiple specialists and years of testing. It wasn’t until one doctor finally asked the question, “could it be celiac disease?” that the road to recovery was within sight. Read more about Sonia’s heroic journey to health, her connection to her animals and how she eventually discovered she had celiac disease. CCA: You had a long and difficult see another specialist until I saw a tion. Did your diagnosis of celiac journey to your celiac diagnosis. psychiatrist. disease come as a shock to you? Tell us a little about this and how SJ: I think it came as a shock to you finally came to be diag- My doctor suggested a second everyone - including the neurol- nosed. opinion, and it was the fifth neurol- ogist and gastroenterologist who SJ: I was originally misdiagnosed ogist that suggested this could be were investigating me at the time. as having had a stroke. I came a neurological manifestation of a Behcets Disease was the top of into the emergency room on Octo- gastrointestinal issue. He referred both of their lists, and I was sched- ber 7th, 2015, unable to speak in me to a gastroenterologist, and uled for a colonoscopy to further complete sentences with left-side I was ultimately diagnosed with investigate when they decided numbness, and both balance and celiac disease. to run the blood test for celiac vision issues. But even though disease. Ultimately my colonosco- something was clearly very wrong CCA: What were your primary py was switched to an endoscopy, with my body, and tests came symptoms over the years leading when the bloodwork came back back showing abnormal results, to your diagnosis? as positive, and I was diagnosed. nobody could nail down a diag- SJ: My most profound symptoms nosis. I saw EVERY doctor imag- affected my ability to speak and CCA: How quickly did you feel inable over the course of the next walk. When I was having what I relief from these symptoms? four years - five neurologists of now know are reactions to gluten SJ: Within the first few weeks, the varying specialties, a neuro-oph- exposure, I would stutter, lose my severity of my symptoms dropped thalmologist, an immunologist, a balance, parts of my body would dramatically. I could think again, I cardiologist, an endocrinologist, a go numb or tingle, I wouldn’t be could speak properly, I could get rheumatologist, a dermatologist, able to think clearly, I would be out of bed and do simple tasks. I an internist, an infectious disease incredibly affected by noise and do have some lasting damage to specialist, and finally a gastroen- light. Concurrently, the things that my body, and things that took lon- terologist. didn’t seem as dire (but were celi- ger to heal, but the change was ac related) were things like sores almost instant. People noticed. At one point, the neurologist that all over my body and in my mouth, saw me through most of my illness slow wound healing, abdominal CCA: What got you through this decided that potentially my symp- swelling, low blood pressure and difficult time? toms were being caused psycho- weight loss. SJ: My husband and my dogs. somatically – maybe it was all in I wrote a blog post way back in my head. He sent a letter to my CCA: Your symptoms were pri- 2015, maybe a week after getting family doctor saying I was not to marily neurological in presenta- Continued on next page 6 | Canadian CELIAC
I will never again in my life take something as simple as being able to go for a walk for granted again. – Sonia sick, and I moaned and com- plained about how as a 30-year- old I had taken everything for granted and how all I wanted to do was be able to hike with my dogs (which is funny in hindsight because I had no idea how much worse it would get). Fast forward just over four years and I was back in the woods, hiking. It’s safe to say I will never again in my life take something as simple as being able to go for a walk for granted again. CCA: You love to hike, what snacks do you take with you on your adventures? SJ: Salty foods!!! One of the things that has lingered for me is low blood pressure, so I need sodium. CCA: How did you find out about the CCA and how has this com- munity helped you? SJ: I knew that celiac disease had a national organization (as most diseases do), but even as a diag- nosed person with celiac disease Sonia enjoying a walk with her beloved I wasn’t sure how I fit into that. dogs Ice, Montana and Poppy. It was the Facebook group that really drew me in - the support, the knowledge and the peace of mind appreciate how devastating of a me, but I know it was my dogs. CINDY HUGHES, MUDDY LOVE PET PHOTOGRAPHY HTTP://WWW.MUDDYLOVE.COM that can be found there is second loss my disease was initially, you They made it very clear what I was to none. I’ve met some of the most need to know about the three furry fighting to get back to, they saw amazing people, made friends for huskies that changed my life and me through the worst of it, they life, and really found a home there. made me someone who would brought me back. u never be able to accept being in The whole story - including the story CCA: Where can people find out bed permanently. My husband of Sonia’s illness - is on our YouTube more about your journey? Dustin always said it was my channel at Huskies in the Hatch. SJ: I think before people can personality that ultimately saved CCA features Sonia’s story HERE. Canadian CELIAC | 7
CCA shines a light on Celiac Disease JOIN US FOR OUR WEBINARS WEDNESDAYS DURING THE MONTH HERE IS A RUNDOWN OF NATIONAL ACTIVITIES OF MAY Join us on social media throughout the day as we kick off Celiac May 4th at 7pm EDT May 1st Awareness Month by announcing the exciting events happening throughout the month and unveil our newest campaign video! Follow the hashtag #CouldItBeCeliac to get updates throughout Neurological complications and the month. celiac disease: With CCA Dietitian Nicole Byrom and special guest Dr. Ian Croall Cook along with Nicole Byrom, our RD, and Promise Gluten May 7th Free! We’re going to be making delicious French Toast with Bacon. May 11th at 7pm EDT M ay 14 May th 14th The annual Give-A-Thon begins today! Please give. The link between IBS and celiac disease with Dr. Maria Ines Pinto Sanchez and Meghan May 15th Join Nicole Byrom, RD, and Lynda Nielson as they walk you through the gluten-free diet. This session has been developed Donnelly, MS, RDN, CDN for newly diagnosed Canadians and those who wish to increase their confidence in the diet. The Give-A-Thon continues, be May 18th at 7pm EDT sure to donate! Iron deficiency anemia with May 16th It’s International Celiac Awareness Day! Check out events happening across the country. Federal Minister of Health, Hon. CCA Dietitian Nicole Jean-Yves Duclos will be sharing a video message in suppor t Byrom and Dr. Frances of celiac disease awareness. The international celiac Scully community is coming together to #ShineALightOnCeliac. Iconic buildings all over the world, including Toronto’s CN Tower, May 25th at 7pm EDT Montreal’s Olympic Stadium and Vancouver’s Science World, will be illuminated green at dusk to raise awareness. Be sure to share with us on Instagram, Facebook, and Twitter Mental health and celiac how you are shining a light on celiac. disease with Dr. Sara Ahola Give-A-Thon ends today. Help us reach our goal! Kohut May 28th Cook along with Nicole Byrom, our RD, and Promise Free! We’re going to be making Southwestern Veggie Webinar Wednesdays are Tortilla Wraps using Promise Gluten Free’s NEW Original proudly brought to you by Tortillas.. FOR MORE INFORMATION AND TO REGISTER please click here. Thank you to our Platinum sponsor, Promise Gluten Free
Media to look out for On your T.V. Our feature story is about Sonia and asks, Could it be celiac? Find our PSA on CBC T.V. affiliates as well as on our YouTube channel. In print Reaching more physicians: The CCA has advertisements in the Canadian Family Medicine Journal as well as the Rural Family Medicine Journal. Watch for our special insert in the Global Heroes supplement in June in the National Post, Globe and Mail, and the Toronto Star. Could it be celiac? On the radio Listen in to CBC Radio for our radio announcement. Our socials Ensure to keep up to date with our Instagram, Facebook, and Twitter feeds this month. We will be hosting giveaways, webinars, and shining a light on celiac disease. #CouldItBeCeliac and #ShineALightonCeliac 10 | Canadian CELIAC
Now Available to order online www.Promiseglutenfree.ca
Ask the expert NEUROLOGICAL COMPLICATIONS AND CELIAC DISEASE Can a strict gluten-free diet stop the progression of neurological problems? The CCA is excited to have Dr on projects investigating traumatic Croall as one of our presenters brain injury and different forms of during our May Webinar Wednes- dementia. The thing that really links day series this month. Sign up on all this together for me, is in all cas- our events page HERE. es I have used MRI scans to study the brain. Additionally, I’ve always CCA: What does a cognitive neu- tried to link any physical injury to roscientist do? the brain, to how the patient is af- IC: A cognitive neuroscientist is fected in their day-to-day life. I think interested in both how the brain it can be easy to forget that how works in a physical sense, and how a patient feels is really the single the mind works in a psychological most important thing! sense. Perhaps most importantly, a cognitive neuroscientist will be CCA: You are currently working most interested in linking these on a project that is looking at Dr Iain Croall is a cognitive together at the same time, for ex- gluten as a risk factor for de- neuroscientist with expertise in ample researching how exactly the mentia, aptly called the GLUDEM various forms of magnetic res- brain is affected by a condition and project. Can you tell us a little onance (MRI) and psychometric how those specific changes impact about how this is going? testing. Dr Croall joined the Uni- the patient’s cognitive ability and This is an important project versity of Sheffield in 2017 and experience of the world. funded by a UK research charity has been predominantly working called the Peter Sowerby Founda- in research examining how the CCA: What are your research tion and is getting close to being brain is affected in gluten related interests? wrapped up. That’s an exciting conditions. He is working to bet- Before joining the University of thing for me to be able to write as ter understand brain pathology Sheffield and focusing on the brain the progress of it was really associated with celiac disease. in gluten-related disorders, I worked Continued on next page 12 | Canadian CELIAC
It’s important for our brains to age healthily, even just in a general sense. – Dr Iain Croall is some research indicating that antigliadin may itself be harmful for different kinds of brain tissue. The GLUDEM project is the first study to really perform a “check” on this; to directly investigate if people who are generally healthy but have antigliadin show any ISTOCK / COM/HIGHWAYSTARZ signs of subtle, but relevant chang- es to their brain and/or cognition when compared to a group of matched controls without the anti- body. If any changes are seen then this would be an indication that stalled by the first half of the While it’s not entirely clear by the overall health of these peo- COVID lockdown in the UK. In what means the brain is affected ple’s brain has been impacted by dementia research, a lot of atten- in conditions like celiac disease, the presence of antigliadin in their tion is being paid to things called it’s thought that antibodies made blood, potentially putting them at a “modifiable risk factors”, which are against gluten which circulate in higher risk of dementia in a similar basically things we can all do in the blood likely do some of the way to how smoking and lack of our day-to-day life which lowers harm. Complicating the diagnos- exercise etc. can also contribute to our risk of developing dementia. tic picture, a little bit is that there this. If this is true, then this is par- These are things like not smoking, are several different gluten-re- ticularly important in public health maintaining a healthy weight, ex- lated antibodies that someone as this would be avoidable through ercising etc. It’s important for our can make. While a person having a lifestyle change - a gluten-free brains to age healthily, even just many of these means they have diet - which is known to eliminate in a general sense. A recent study a particular diagnosis, like celiac antigliadin from the blood when found that if everyone followed disease, others can occur without adhered to strictly. all currently known ways to lower it meaning the individual has any dementia risk, then the overall condition. Antibodies against “gli- CCA: You are also working on a prevalence of dementia may drop adin” (called “antigliadin”) are an project focused on neuropathol- by 40%. The GLUDEM project is example of these, and one in ten ogy in gluten-related disorders. interested in seeing if people who of all people make antigliadin. Can you tell us about this? are generally considered healthy, This is a recently started project but who nonetheless have an Current medical treatment is essen- funded by the American research immune reaction to gluten after tially uninterested in this, but this charity Beyond Celiac. At the eating it, may be at risk of some implication that antigliadin is benign hospital in Sheffield where our consequences in the brain be- has happened without any real con- research group is based at, we cause of this reaction. sideration. At the same time, there Continued on next page Canadian CELIAC | 13
... problem ... for the medical community to ... recognize that the brain can be involved in celiac disease – Dr Iain Croall may progress over time, what helps stop that, and how these patients are affected by all this in their daily life. CCA: Neuropsychological dam- age in people with celiac disease can be very debilitating. What ev- idence do we have that supports the conclusion that the two are ISTOCK.COM / DEDMITYAY linked? I have been working in this field since 2017, and it’s felt clear to me since day one that one of the big- gest problems that needs solving is for the medical community to MRI scan and blood test are primarily important for treatment of properly recognize that the brain patients, and a wealth of information which can be used in research can be involved in celiac disease. There have been several pieces have a medical clinic which has Organizing and taking proper of research over the years point- been run for decades by Prof. care of this data will allow for ing to this, but they have been Marios Hadjivassiliou which is very powerful and detailed anal- relatively scarce and, speaking as dedicated to the care of patients yses to study how these patients’ a neuroscientist, they have some- with diagnosed neurological prob- condition’s progress over time, times suffered from blind spots lems relating to underlying gluten and most pertinently what factors that make it easier to dismiss for sensitivity. Some of these patients most help treat them. It is thought anyone who’s skeptical of the will have celiac disease, but oth- that a strict gluten-free diet can idea. For example, a lot of early ers may not and instead have a stop progression of neurological research on this topic included purely neurological, gluten-related problems in cases like these, but only celiac disease patients who condition such as gluten ataxia it is critical that we know this for have been referred to a neurology or gluten encephalopathy. Over sure. clinic because their symptoms got the years we have cared for over that bad. It is understandable that 1000 such patients, with most of In addition to using this pre-exist- research would focus on groups these coming to multiple clinic vis- ing clinical data, this project is also like this because they are an im- its over many years, with an MRI collecting new information in- portant demographic to study, but scan and blood test at each one. cluding cognitive test results and it could also mean someone says, While primarily important for the quality of life questionnaires. All “well they’re not representative, treatment of these patients, this is put together this is a very exciting most celiac patients never need also a wealth of information which study which will allow for an in- that referral”. can be used in research. depth look at how these problems Continued on next page 14 | Canadian CELIAC
... ongoing studies are so important to fully understand if the diet alone is completely adequate – Dr Iain Croall that study picked up by a major gastrointestinal journal who also provided an editorial with it; hope- fully a sign of these concepts being more accepted. Outside of our group, important studies have also shown cognitive changes in celiac disease patients ISTOCK.COM / HIGHWAYSTARZ (with some indication that cognition may improve again after starting a gluten free diet), mood problems, and increased risk of developing certain types of dementia. The most rewarding projects I’ve disease and compare their brains While all of this can seem concern- been involved in have been those and psychometric performance to ing, the potential of the gluten-free that have tried to directly address matched controls from the same diet being a treatment that can this skepticism. The best example study. That this was data collect- ameliorate all of this if followed of this was one a couple of years ed by an unaffiliated third party, strictly is reassuring. That’s why ago now where we used data and from participants who by the ongoing studies are so important from a huge database in the UK truest definition are from the gen- to fully understand if the diet alone called the UK Biobank. The UK eral, representative population, is completely adequate, and to Biobank is a giant initiative that would make any findings very raise awareness so that diagnosis recruited 500,000 participants of difficult to argue against. Sure can be made at the earliest oppor- all healthcare backgrounds and enough, we uncovered physi- tunity, in all types of patients who collected various kinds of infor- cal changes to the brain’s white would benefit from the diet. u mation about them. Brain MRI matter from the imaging data, as scans and cognitive performance well as some cognitive changes Want to hear more from Dr Croall? is available in some of these, and and indications of mental health Sign up here for our May 4th webinar! we undertook to study all those problems in our findings. It was HERE. Upcoming Events and Activities participants who have celiac additionally heartening to see - Canadian Celiac Association ISTOCK.COM / CENTRALITALLIANCE 12 | Canadian CELIAC
y n Fortification regulations Hocke r d i visio win ger ort: d s o A A h t sp Win es A Rig ourite a g ue: Spitfir s i t ion: Fav Le Jr. Po WHY ARE ALL FLOURS OR PEOPLE NOT TREATED EQUALLY? Lack of fortification Mandatory fortification regula- fortification standards in 1998 to DEPOSIT PHOTO tions were created to prevent reduce neural tube defects in of GF flour puts peo- nutrient deficiencies in all Cana- babies. This fortification strategy ple with celiac dis- dians. Regular gluten-containing has proven to be a public health flours require mandatory fortifi- success with a 46% reduction in ease at health risk cation of iron, folic acid, niacin, the prevalence of neural tube riboflavin, and thiamin. Of this list, defects (1). Evidence tells us that compared to other the most recent addition is folic fortification works. Canadians acid, added to the mandatory Continued on next page 16 | Canadian CELIAC
Currently, gluten-free flours are exempt from Canada’s mandatory nutrient fortification standards. We are advocating for change. inates against the gluten-free population. The CCA is actively raising this issue with Health Can- ada and is requesting mandatory fortification of gluten-free flour to the equivalence of gluten-con- taining flour. We believe this will reduce the nutrient deficiency bur- ISTOCK.COM / MINDSTYLE den on our community and help alleviate additional costs required from otherwise necessary supple- mentation. u If you have questions or comments re- Currently, gluten-free flours are bies. Neural tube defects develop garding this issue, please email: nicole. exempt from Canada’s mandatory early in pregnancy, often before byrom@celiac.ca nutrient fortification standards. a woman knows she’s pregnant, 1. Colapinto, C.K., O’Connor, D.L., & The CCA is advocating for change. which is why fortification has been Tremblay, M.S. (2011). Folate status of a public health success. Women the population in the Canadian health The gluten-free community is who consume a GF diet, are not Measures Survey. Canadian Medical concerned about this current lack provided with fortification and Association Journal, 183(2), E100-E106. of fortification for several reasons. therefore, are at a disadvantage doi: 10.1503/cmaj.100568 People with celiac disease (CD) when it comes to adequate base- 2. Statistics Canada. (2012). Iron are 17 times more likely to be iron line folic acid levels. Sufficiency of Canadians. Retrieved deficient than the general pop- from: https://www150.statcan.gc.ca/ ulation (2,3). In fact, a Canadian We are now facing a severe n1/en/pub/82-003-x/2012004/arti- study found that 67.8% of adults public health problem that can be cle/11742-eng.pdf?st=EYgP9jPF had iron deficiency anemia upon mitigated by creating an equitable 3. Pulido, O., Zarkadas, M., Dubois, S., diagnosis with celiac disease (3). fortification standard for the >1% Maclsaac, K., Cantin, I., La Vieille, S., This is considered a severe public of Canadians who cannot con- ... & Rashid, M. (2013). Clinical features health problem. One of the con- sume gluten-containing products. and symptom recovery on a glu- tributing factors to this problem Ignoring the need for mandatory ten-free diet in Canadian adults with is the absence of iron fortifica- fortification of GF food muffles the celiac disease. Canadian Journal of tion in gluten-free flours. voices of those who initially cre- Gastroenterology, 27(8), 449-453. doi: ated the all-inclusive fortification 10.1155/2013/741740 Folic acid is another nutrient of strategy. 4. Jamieson, J., Weir, M., & Gougeon, L. concern in our population. As not- (2018). Canadian packaged gluten-free ed earlier, folic acid was added to It is our opinion that this is a foods are less nutritious than their Canada’s fortification standards to human rights issue, as the lack regular gluten-containing counterparts. reduce neural tube defects in ba- of mandatory fortification discrim- PeerJ 6:e5875; DOI 10.7717/peerj.587 Canadian CELIAC | 17
Seniors’ health TAKING THE FEAR OUT OF LONG-TERM CARE Living in long-term care should not mean increased risk Long-term care (LTC) is for people requiring accommodation who can no longer live safely on their own. The facilities provide, high levels of care, 24-hour nursing care, meals, and housekeeping, along with social and recreational activities for their residents. In the fall of 2021, the Prime Min- ister directed the federal Minister of Health to undertake a commit- ment to improve the national stan- dards for long term care homes in Canada. The standards review has been ISTOCK.COM / MONKEYBUSINESSIMAGES assigned to a joint initiative by The Standards Council of Canada (SCC), Health Standards Organiza- tion (HSO) and Canadian Stan- dards Association (CSA Group) to design, “two new national Continued on next page 18 | Canadian CELIAC
People with celiac disease deserve safe, accessible care at their most vulnerable point in life. celiac disease deserve safe, acces sible care at their most vulnerable point in life. Strategies and training need to be developed to properly educate various food service pro- viders in LTC facilities and we have offered our expertise to help with this education. ISTOCK.COM / LUCIGERMA CCA has offered comments on the following 10 sections of the standard: 1. Governing LTC Home’s Strate- gies, Activities, and Outcomes 2. Promoting Resident-Centred standards for LTC that will be practices are sub-optimal, with Care with a Compassionate, Team- shaped by the needs and voices potential risk of gluten cross-con- Based Approach of Canada’s LTC home residents, tamination. 3. Providing a Welcoming and Safe workforce, local communities, as Home Environment well as broader members of the With this study in hand, CCA has 4. Respecting Residents’ Rights public.” The public consultation submitted its formal feedback as 5. Enabling a Meaningful Quality of process was open from January to part of the consultation urging Life for Residents March 27, 2022. that the right to safe, properly re- 6. Delivering High-Quality Care sourced gluten-free food be part of Based on the Life Experiences, In 2018, the CCA studied 52 long the revised standards. People with Needs, and Preferences of Resi- term care facilities of varying dents sizes to assess the accessibility Do you want to learn more 7. Enabling the Delivery of of the gluten-free diet in these about seniors’ health? Check High-Quality Care through Safe and facilities. A patient survey was out our resources on bone Effective Organizational Practices done in conjunction to weigh health, medications and fibre. 8. Coordinating Care and Integrat- patient and caregiver satisfaction ed Services Medications and the GF diet: levels of accessing and receiving 9. Enabling a Healthy and Compe- Medications and the glu- care. Our study, that has been ten-free diet - Bing video tent Workforce submitted for poster presentation Bone health and the GF diet: 10. Promoting Quality Improve- at the 2022 International Celi- https://youtu.be/uLGWDiD- ment ac Disease Symposium in Italy, fMn0 concluded that availability of LTC Fibre and the GF diet: Fibre The proposed standards and more facilities that provide safe GF on a GF diet. information can be found here: food is limited. Food preparation https://longtermcarestandards.ca/ u Canadian CELIAC | 19
Celiac blood tests it threw me for a loop when I had to re-configure all my recipes so, owner of The Layered Shop NEWLY FUNDED TESTS WILL HELP CLOSE THE GAP TO DIAGNOSIS 85% of people at risk for celiac disease are undiagnosed Newly funded celiac blood tests will help close the gap to diag- nosis, increase access to treat- ment. 85% of people at risk for celiac disease are likely undiag- nosed. April 4, 2022, Mississauga, ON. The Canadian Celiac Associa- tion (CCA) hopes that an Ontario Ministry of Health pilot program which includes providing fund- ing for crucial blood tests for celiac disease will be made permanent, to ensure ongoing screening of the 1 in 114 Ontar- ISTOCK / OKSKUKURUZA ians at risk for the autoimmune disorder. The pilot announced last Novem- ber has been officially extended until March 31, 2023 and allows the patient. provincial health insurance plan,” Ontario residents to be screened “Ontario has the unfortunate says Melissa Secord, National Ex- for celiac disease among other distinction of being the only ecutive Director of the Canadian tests at an approved communi- province in Canada that does not Celiac Association. ty-based laboratory, at no cost to cover these vital tests through the Continued on next page 20 | Canadian CELIAC
If we can get permanent OHIP coverage, the tests will be added to the regular laboratory requisition form ... Secord “We are hoping that the Ministry That could improve multiple practitioners, emergency of Health will see the tremen- rooms, and on expensive inappro- dous value in offering the free the quality of life priate tests such as ultrasounds, tests at community labs, not only x-rays and other blood work.” by shrinking the gap to diagno- for the estimated sis but reducing up to 10 years of 100,000 Ontarians at Delays in diagnosis of celiac health decline which people with disease can lead to malnutrition, celiac disease can endure.” risk for the disease osteoporosis, neurological prob- and could generate lems, reproductive issues, arthri- “That could improve the quality tis, other autoimmune diseases, of life for the estimated 100,000 potential savings and even cancer. Ontarians at risk for the disease and could generate potential for the health care To learn more about the pilot, savings for the health care sys- system of as much as understand your risk for celiac tem of as much as $125 million disease and to take our Symptom over the same period. [1]” $125 million over the Quiz, click on the links below. same period. The Canadian Celiac Association’s Celiac disease – a genetic auto- vision is to see every Canadian immune disorder where gluten, –Melissa Secord, with celiac disease is diagnosed a protein found in wheat, rye, and empowered. Since 1973, the and barley, causes an inflam- CCA Executive Editor CCA has been increasing aware- matory response damaging the ness of the disease, investing in intestinal lining – frequently Right now, the tests are not listed research and providing programs goes undiagnosed. The cost because historically they are paid to support people with gluten dis- of the tests span from $65 to for by the patient. Celiac blood orders with help from local chap- $150 depending on what is tests are often missed by health ters across Canada in most major ordered, which is a deterrent practitioners when selecting cities. u for many Ontarians on low or blood work to screen for health fixed incomes. Celiac disease is problems,” Secord said. Read more here! Celiac Blood Test genetic, so the potential cost to Ontario - Canadian Celiac Associ- a family of four to get screened “Prior to the pilot, the only way to ation is over $400. The tTg IgA and have the tests covered was to be Take the symptom checklist: IgA blood tests are recognized hospitalized. Given the current Celiac Disease Symptom Check- internationally as the first step pressure on the health care list - Canadian Celiac Association to clinical diagnosis. system from COVID-19, this is not an appropriate use of hospital [1] Calculations are based on 100,000 “If we can get permanent OHIP services and resources, nor good Ontarians estimated to be undiag- coverage, the tests will be added care for patients. In addition, nosed celiac disease factoring in to the regular laboratory requisi- health care dollars were being cost of treatment of average health tion form used by family doctors. wasted on needless trips to complications. Canadian CELIAC | 21
Save me for gluten free EVERYONE DESERVES ACCESS TO SAFE FOODS Individuals across Canada adopt the ‘Save me for gluten-free’ campaign and lean in to support those in need. UKRAINIAN The Save Me for Gluten Free campaign has blossomed in different directions REFUGEES recently and with the conflict in Ukraine, the community has stepped up to help. The increasing cost of food is driving more people to seek help especially CCA now has bi- by people who need gluten free and have limited financial means. lingual resources in Ukrainian to Many chapters and support groups have adopted local food banks to identify the needs in their community. Manitoba Chapter volunteers are working with support refugees Manitoba Harvest to coordinate gluten-free hampers for the 3,000 families in with CD arriving need. They have a section in the food bank warehouse where they collect and prepare bins. in Canada. These resources are be- Other chapters and local volunteers, like Bev Ruffo in Hamilton, Ontario are ing shared with running food drives. We will be running a GF food drive in coordination with the annual Gluten Free Garage event in Toronto on Sunday, May 29. Bring your Ukrainian agen- non-perishables in support of the Beeton Cupboard Food Bank. cies, Red Cross and food bank networks You too can start your own Save Me for Gluten Free food drive in your own area. Contact Caleigh McAulay at our Client Support Desk or visit our website. across Canada as Simply speaking with your local food bank and shopping for what GF food they well as local food need is a great way to help. Every little bit helps. And don’t forget to download banks. Contact us if and print our “Save Me for Gluten Free” decals that can be attached to a bag or food product for donation to a food bank bin in a supermarket, or directly you know someone to your local food bank. On our website, you can download the logo, and find who could use these local food banks that will accept your gluten-free donation. u resources. For more information go to https://www.celiac.ca/get-involved/savemeforglutenfree/ 22 | Canadian CELIAC
Research roundup LEARN THE LATEST IN THE WORLD OF CELIAC DISEASE Top 5 key learning points from Dr. Stefano Guandalini, professor emeritus at the University of Chicago ISTOCK .COM / DIAMOND DOG and founder of the Martha Henderson University of Chicago and Patty Massel Celiac Disease Centre 1. It is calculated that 70-80% of adults with celiac disease, at time of diagnosis, have low bone mineral den- sity. However, within the first two years on a gluten-free diet, 80% will reach a normal bone mineral density. 2. The risk of first-degree relatives developing CD is 15-20%. 3. For parents with a high-risk child, the first celiac screen should be conducted at age three. There is no indication for a test before age three unless symptoms arise. After the initial test, it is recommended to test every three-four years. To avoid the burden of over testing and to rule out celiac disease, Dr Guandalini sug- gests genetic screening. 4. To reduce the risk of developing celiac disease, the first two years of life are crucial. Studies have shown that viral infections in general, and especially respiratory infections, in the first two years of life are detrimental to the development of celiac disease. Ideally, children would eat a Mediterranean diet (high in fruit, vegetables, fish, legumes, limited amounts of red meat) and avoid illness with moderate amounts of gluten. 5. Good news: research is moving at a rapid rate! We can expect that in a short period of time (~two-three years) we should have products on the market that will protect you from cross contamination. Continued on next page Canadian CELIAC | 23
The main objective was to obtain the presence and levels of un- declared gluten in bakery products with gluten-free claims Summary of CFIA Food Allergen Targeted Survey Undeclared Allergens and Gluten in Bakery Products with Gluten-free claims – June 2020 to March 2021 The main objective of this survey was to obtain baseline information regarding the presence and levels of undeclared allergens and gluten ISTOCK.COM / MD SAIFUL ISLAM KHAN in bakery products with gluten-free claims. There was a total of 287 products sampled between June 2020 and March 2021. Samples were collected from grocery stores located in 6 major cities across Canada (Halifax, Montreal, Toronto, Ottawa, Vancouver, and Calgary). All samples were tested as sold by an accredited food testing labora- tory under contract with the Government of Canada. The Cost of Of the 287 samples tested: • 91% (261) of all bakery products with a gluten-free claim did NOT a Delayed Celiac contain any detectable levels of gluten and allergens. Disease Diagnosis: • 9% (26) of all bakery products with a gluten-free claim DID contain undeclared gluten and/or allergens, including beta-lactoglobulin One Woman’s (BLG), casein, egg, sesame and soy. Of the 26 bakery products with a gluten-free claim that were found Journey to contain undeclared gluten and/or allergens: • Five products were found to contain varying levels of undeclared Receiving a timely test and diag- gluten. nosis of celiac disease is import- • Four of these products were found to have levels above 20ppm of ant, not only to reduce suffering gluten and were forwarded to the CFIA for follow-up testing. for patients and prevent the risk • After further review, one of these products containing gluten was of developing serious long term deemed to represent a health risk and was recalled. health complications but it also To review the full survey, visit: Food safety testing bulletin and re- equals less cost to both patients ports - Canadian Food Inspection Agency (canada.ca) and the healthcare system. Continued on next page To learn more about the cost of a de- layed CD diagnosis: see infographic here.
There is no science to support that today’s wheat is any more toxic than wheat from years prior Columbia University Symposium for Celiac Disease. April 8 & 9, 2022 Here’s what we learned. z Early diagnosis of celiac disease (
Your support LET US COUNT THE WAYS YOU MADE AN IMPACT Your support has helped even more Canadians with celiac disease become diagnosed and empowered this past year. While we can’t list everything you’ve helped us accomplish, we’ve provided some of the highlights for you. You’ve helped us reach and support more people than ever before! Thank you for your generous support in 2021! • 3 million views of CCA’s public awareness campaign video. • 662,669 pages of resources viewed on CCA’s website, celiac.ca. • 290,000+ were new visitors looking for expert content and information. • $30,000 dispersed in Canadian celiac disease research grants. • 31,500 people received CCA’s newsletters and email updates. • 1 6,995 people supported on CCA’s moderated Facebook Group community. • 6,637 products added to CCA’s GF Product Finder carrying the CCA’s Gluten-Free Certification Program (GFCP) mark. • 4,446 petitions signed and sent to the Ontario Legislative Assembly supporting access to free celiac blood testing in community-based labs. • 3,050 downloaded CCA’s Living Gluten Free Guidebook to help them navigate the gluten-free diet. • 3,480 people learned more about managing their celiac disease from experts through 24 free webinars and online education. • 1,600+ people received personal support, resources and/or advice through CCA’s Client Support Desk. • 1,498 kilometres run and walked by 52 people for the Scotiabank Charity Challenge. • 900 Growing Up Celiac workbooks distributed across Canada. • 657 people completed our online Symptom Checker to take the first steps in becoming diagnosed. • 65 letters sent to Members of Parliament expressing concerns about human rights and access to food while in federal quarantine hotels. • 48 food banks providing gluten-free food and supporting the Save Me for Gluten Free food security initiative • 44 informational videos added to our YouTube channel. • 13 Chapters provided local supports and resources for the community. • 2 new specialty web resources developed in Punjabi and Arabic and one Urdu-language webinar. • 1 Celiac Blood Test Pilot program launched in Ontario. u 26 | Canadian CELIAC
Atypical symptoms CELIAC DISEASE IS A FAMILY AFFAIR Celiac disease is commonly misdiagnosed and underdiagnosed, even in its most typical form. The best- known symptoms of celiac disease are digestive in nature – chronic diarrhea, abdominal pain, and unintend- ed weight loss. However, celiac disease is much more than a digestive problem. There are ‘atypical’ symp- toms that present themselves, often without any gastrointestinal involvement. The top atypical symptoms include anemia, bone disease, elevated liver enzymes, neurological issues and reproductive problems. Want to read more about atypical symptoms of celiac disease? Click here to learn more. 6 Atypical Symptoms of Celiac Disease - Canadian Celiac Association Family screening: You may not be the only one! Family screening for celiac disease - YouTube Click here for more info: Could it be Celiac - Canadian Celiac Association u
Dear Dietitian COULD IT BE CELIAC? You asked. We answered. CCA dietitian Nicole Byrom helps answer your frequently asked questions Q I was diagnosed with celiac disease one year ago. What do I need to do for annual follow up? A Celiac disease management is very important to ensure you are healthy and on the right path. Annually, you should see your GP for a physical exam, to have your weight and BMI checked and for bloodwork. As part of this yearly bloodwork, we recommend that you have your TTG antibody levels checked as well as any previously abnormal levels re-checked. In addition, having your thyroid (serum TSH) checked every two years is recommended as well as a bone density scan if previously abnormal. Ideally, you should have a visit with your registered dietitian (RD) to ensure that you are the right track. You only need to be re-re- ferred to a gastroenterologist if you have abnormal serology or symptoms and have met with an RD who has reviewed your diet. For more information click here: Management of Celiac Disease Patients - Canadi- an Celiac Association Q I have CD and have recently been told I also have low levels of iron. How can I ensure I am getting enough iron in my diet while eating gluten free? A Iron is a nutrient of concern for many people with celiac dis- ease. Fortunately, many foods that are rich in iron are naturally gluten free. There are two types of dietary iron: heme and non- heme. Heme iron is most easily absorbed by the body and can be found in animal sources, such as liver, beef, mussels, tuna and chicken. Non-heme iron is absorbed at a lower rate and is typically found in plant sources, such as lentils, chickpeas, pumpkin seeds and tofu. While damage to the intestine may be a limiting factor in how much iron your body will absorb, one tip to help increase absorption is to pair dietary sources of iron with foods high in vitamin C. Here is the link to our Iron Facts Sheet if you would like to learn more about iron. Remember: as your gut heals, your ability to absorb iron will increase. Check out this short video and facts sheet on iron to learn more. Q I’ve heard that dental enamel defects can be an indication of celiac disease. Is this true? A Yes, this is true. In fact, dental enamel defects may possibly be the only manifestation of pediatric celiac disease. Children and adults with celiac disease can have similar oral manifestations. Some of the most common oral manifestations include “dental enamel defects” and “recurrent aphthous ulcers”. For more information on this topic check out our fact sheets: Oral Health - Canadian Celiac Association. u Have a question you’d like answered in the next magazine, email us at AskTheCCA@celiac.ca 28 | Canadian CELIAC
DISCOVER HEMP FOR HOLISTIC HEALTH Approved by the Canadian Celiac Association • 10 g protein • 12 g omegas 3 & 6 • + other essential nutrients per 30 g serving Sprinkle Manitoba Harvest Hemp Hearts on salads and yogurt, or blend them into smoothies. The rich, nutty taste of hemp hearts is also delicious in oatmeal. Strawberry Shortcake Smoothie Servings: 3 Ingredients 3 cups frozen strawberries 1 3/4 cup vanilla almond milk 1/4 cup cashew butter 5-7 medjool dates Directions 1 tsp. cinnamon Place all ingredients in a blender and 1/3 cup Manitoba Harvest pulse until smooth and creamy. Hemp Hearts Add more liquid if it's too thick. © 2021 MANITOBA HARVEST USA LLC ALL RIGHTS RESERVED manitobaharvest.com
Celiac disease & iron WEIGHING YOUR RISK FACTORS FOR IRON DEFICIENCY 67.8% of adults with celiac disease have iron deficiency anemia BY ALLYSA SOLBERG out enough iron, the blood cannot transport enough ISTOCK / CINNEFOOTAGE VISUALS oxygen, resulting in a loss of cell function and a For individuals living with celiac disease (CD), gluten decrease in energy production. This is why one of the ingestion causes damage to the lining of the intestine most common symptoms of iron-deficiency anemia where most nutrients are absorbed. For this reason, is fatigue, weakness, and dizziness. Other symptoms individuals with CD are more likely to experience nu- include abnormally pale skin, inability to regulate body trient deficiencies, especially iron. temperature, and abnormal heart rate. Check out this short video created by registered dietitian, Nicole A Canadian survey found that 67.8% of adults with Byrom, to learn more about iron. celiac disease had iron deficiency anemia (IDA) upon diagnosis of CD (1). The World Health Organization Only 3% of the general Canadian population was defines this as a severe public health problem (2). found to have iron-deficiency anemia, with higher rates among females than males (3). There are four Iron plays many vital roles in the body. It supports main factors that increase a person’s risk of iron de- neurological and physical functioning as well as the ficiency anemia, seen in the table below. Individuals creation of red blood cells. Most importantly, iron is with celiac disease are at an exponentially higher responsible for carrying oxygen from the lungs to risk of IDA because they meet the criteria for all four the rest of the body within the blood stream. With- of these risk factors. Continued on next page 30 | Canadian CELIAC
Individuals with undiagnosed celiac disease are at an exponentially higher risk of iron - deficiency anemia Factors contributing to your risk for iron-deficiency in anemia GENERAL RISK FACTORS FOR IDA SPECIFIC RISK FACTORS FOR CD 1. A diet low in iron z While many iron-rich foods are naturally glu- ten-free, processed gluten-free foods are not fortified with iron to the equivalence of their gluten-containing counterparts. This results in an overall lower dietary intake of iron in the celiac population 2. Gastrointestinal tract abnormalities leading z Gluten ingestion leads to intestinal dam- to malabsorption age and nutrient malabsorption. Following a gluten-free diet can lead to intestinal healing, however, healing time is slow and up to 22% of celiac individuals remain iron deficient 3. An increased need for iron by the body z Individuals with celiac disease have an in- (growth, pregnancy, lactation, healing from creased need for iron due to the role it plays wounds or infection) in wound healing. Intestinal damage caused by gluten-ingestion needs to undergo the healing process. 4. Blood loss (menstruation, injury, or GI z Gastro intestinal blood loss, while less bleeding) common, is still seen in some celiac patients. Most of the iron in our body is stored in the blood, so when blood is lost, iron goes with it. References: 1. Pulido, O., Zarkadas, M., Dubois, S., Maclsaac, K., Cantin, I., La Vieille, S., ... & Rashid, M. (2013). Clinical fea- tures and symptom recovery on a gluten-free diet in Canadian adults with celiac disease. Canadian Journal of Gastroenterology, 27(8), 449-453. doi: 10.1155/2013/741740 2. World Health Organization. (n.d.) Anemia. Nutrition Landscape Information System. https://www.who.int/ data/nutrition/nlis/info/anaemia 3. Statistics Canada. (2012). Iron Sufficiency of Canadians. https://www150.statcan.g years of gluten-free food safety 4. Sub-header: Since launching the Gluten Free Certified Program in 2012 our program has grown to over 6000 products c.ca/n1/en/pub/82-003-x/2012004/article/11742-eng.pdf?st=EYgP9jPF 5. Stefanelli, G., Viscido, A., Longo, S., Magustroni, M., & Latella, G. (2020). Persistent deficiency anemia in patients with celiac disease despite a gluten-free diet. Nutrients, 12(8), 2176. doi: 10.3390/nu12082176 u Canadian CELIAC | 31`
Celebrating 10 years HAPPY BIRTHDAY Happy 10th birthday to the CCA’s Gluten-Free Certification Program (GFCP). This program is the only voluntary certification program of its kind in Canada, designed for manufacturers of gluten-free food. Since 2012 the CCA has been working hard, together with our partners at BRCGS, to add more choice and products to the marketplace with the trusted GFCP logo. We are proud to say that we have reached 6,000 products and we continue to grow! For the consumer, this means an extra level of security in knowing that the foods they choose with a GFCP logo are safe for all requiring a GF diet. and finished products, the GFCP Looking for new products? Check provides added assurance that the out our most recent additions to products carrying the mark are both the product finder! safe and gluten free. z Cal & Gary’s - Gluten Free 1 to 1 Flour, Glut en Free All-Purpose Another key differentiation of the Flour, Gluten Free Almond Flour GFCP is that it requires the use of z Made Good - Gluten Free Al- qualified, trained and approved in- mond Flour, Gluten Free Oat Flour dependent third-party auditors (not z President’s Choice - Sea Salt inspectors) to verify that manufac- Butternut Squash Mini Crackers, turers meet the program’s require- Plant-based Cheddar Seasoning What makes the GFCP different ments on an annual basis. This Cauliflower Mini Crackers, Sea from other gluten free claims? third-party relationship is essential Salt Cauliflower Mini Crackers The GFCP differentiates itself from for any potential conflict of interest z Russet House Organic - Sweet other certification programs with in the certification process. Potato Fries the use of a management sys- z Prix Club - Honey Garlic Sausage tems approach to systematically A manufacturing facility which z Marcangelo - Jumbo Chicken prevent failures, rather than to undergoes a successful third-party Kabobs 2pk, Jumbo Chicken rely solely on end-product testing. audit process will be eligible to use Kabobs BBQ 2pk, Jumbo Pork This approach is preventative in the Canadian Celiac Association’s Kabobs 2pk nature and addresses all potential trademark on product packaging z BFree- Pita Breads Stone hazards, including gluten, as part and on marketing/advertising Baked, Wholegrain Pita Breads of a manufacturers overall food materials. To learn more about Stone Baked u safety and quality management the program, or to Register Your system. Combined with analytical Interest, please visit the BRCGS For more amazing gluten-free prod- testing procedures for incoming website Global Supply Chain As- ucts, please visit our GFCP Product ingredients, as well as in-process surance | BRCGS. Finder! 32 | Canadian CELIAC
Accidental gluten I’VE BEEN GLUTENED NOW WHAT? An accidental gluten exposure is no joke. Other than waiting it out, is there anything that helps? ISTOCK / KUCHERAV It’s bound to happen at some point: you get three bites into your meal at a restaurant before realizing that the waiter mixed up your order. Accidental gluten exposure is no joke, and when the pain, nausea and di- arrhea get started, it’s normal to start wondering if there might be something – anything! – that might make you feel better faster. There are all kinds of myths, anecdotes and remedies out there, but what works when you’ve been exposed to gluten? We asked two experts on our CCA Professional Advisory Council – a doctor and a registered dietitian. Continued on next page Canadian CELIAC | 33
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