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CanadianCELIAC

CANADIANS step up for CELIAC!

PLUS The scoop on thyroid disease and celiac Busting allergy myths Savoury recipes for autumn The Celiac Pipeline – What's on the horizon for research CCA board of directors

Executive Directors Janet Bolton, President Meredith Birchall-Spencer Treena Duncan, Past President Tamara Close Jennifer Stebbing, Secretary David Congram Andrew Kotys, Treasurer Jessica Danford Selena DeVries Kathryn Djordjevic Ravil Veli Contact us Canadian Celiac Association 1450 Meyerside Dr., Suite 503 Mississauga, ON. L5T 2N5 Phone: 905.507.6208 or 800.363.7296 Fax: 905.507.4673 | Email: [email protected] www.celiac.ca Canadian CELIAC A MAGAZINE FOR CANADIANS WITH CELIAC DISEASE AND GLUTEN SENSITIVITY

Editorial Board

Melissa Secord RonniLyn Pustil Kim Shiffman Gayle Grin Janet Dalziel Adam Weinmann Jessica Danford Graphic design: gaylegrin.design

Contributors Dr. Kimberley Bender Justine Dowd Meredith Birchall-Spencer Rosie Fountotos Deborah Choi Julie Greene Nicole Cox Dr. Wendy Gould Janet Dalziel Dr. Laura Lachance Selena de Vries

COVER PHOTO OF LUCAS WAY BY ELISA WAY Copyright © 2020 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 FALL 2020

As we move into winter facing continued uncertainty about so many things, it’s more critical than ever to take care of our wellbeing. In this issue, we focus on physical and mental wellness, along with a healthy dose of comfort.

RUNNING TOWARDS A CURE. 7 MY CELIAC JOURNEY. 11 8 STEPS TO FEEL BETTER, FASTER. 15 MENTAL HEALTH MATTERS, PART 2. 17 UH OH! I GOT GLUTENED! 21 THE GRANOLA IN THE ROUGH. 28 FOUNDERS KEEPERS: AWARD WINNING ANNAPOLIS RESTAURANT’S APRICOT CHUTNEY. 36 SEASONAL . 31 THE PROACTIVE CELIAC STUDY. 39 2

VOLUME 4 | ISSUE 3 Canadian CELIAC | 3 From the editor’s desk

COME TOGETHER

Every marathon starts with a single step. This year, the road may have been filled with new obstacles, but by focusing on single steps, the CCA is staying the course. We may have been physically distanced this year, but in so many ways, the Canadian celiac community is more connected than ever. Earlier this year, the Canadian celiac community joined forces by participating in research on celiac disease and COVID-19. Last month, folks acoss the country stepped up to raise funds through the Scotia- bank Charity Run, coming together virtually in the fight to solve the challenge of celiac disease. I was proud to complete a virtual mara- thon, walking and running 42 Km. Recently, the CCA Facebook group surpassed 14,000 members. And this month, our second virtual con- ference of the year will deliver free, world-class education on celiac disease, right to people’s living rooms. Everywhere you look, the story is about coming together, rather than remaining apart. In this issue, we’ll look at some of the steps researchers at Provention Bio are taking to address celiac disease and some potential opportu- nities to participate in future research. We are constantly being armed with new knowledge about celiac disease. Early in the pandemic, CCA partnered with researchers at McMaster University in the first large-scale study to determine if people with celiac disease were at increased risk of COVD-19. The recently-released findings providereas - The CCA created its magazine surance that the risks are no higher for those with celiac disease. with the goal of connecting the celiac community across the As we head into winter, with continued restrictions and ongoing uncer- country and to help empower tainty around the COVID-19 pandemic, this issue is also about steps we readers to find a better quality can take to bolster our physical and emotional wellbeing. We have had of life with celiac disease. Now experts weigh in on self-care, mental health, food allergies, thyroid dis- we’d like your feedback. Help ease and how to deal with the fallout of accidental exposure to gluten. the CCA with insights on how to provide the best support, We may be going through challenging, uncertain times, but we can take evidence-based information, time to comfort our souls and stay empowered and hopeful with the education and advocacy for ever-growing body of knowledge about celiac disease. Let’s take care the Canadian gluten-free com- of ourselves and stay connected, and we can make it to the finish line munity by taking this quick stronger than ever. survey on our magazine. https://www.surveymonkey. com/r/CDNCELIAC Melissa Secord

4 | Canadian CELIAC 2 menus. 16 plant- FREE based recipes. All joy. Download your FREE Second Helpings GLUTEN-FREE holiday recipe book for gluten-free foodies. 16 plant-based recipes + 2 menus for HOLIDAY grown-ups and kid-inclusive feasts alike. Serve up gluten-free goodness, no matter RECIPE BOOK what holiday you’re celebrating. Get the recipe book.

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6 | Canadian CELIAC Scotia Bank

RUNNING TOWARDS A CURE The CCA relies on fundraising, and this year, Canadians once again stepped up to the plate.

Using the hashtag #teamglutenfree on social media channels, walkers and runners show- cased a beautiful fall across Canada for training.

MOST PHOTOS ARE FROM PARTICIPANTS’ INSTAGRAM ACCOUNTS

RonniLyn Pustil walks with her family

Jennifer Stebbing, CCA National Director was our top fundraiser, matching her personal donations.

Ashley Gismondi Canadian CELIAC | 7 We set out to “run across Canada” and show that celiac and gluten-related disorders are affecting people across the country.

BY JULIE GREENE

Over the past three years, the CCA has raised more than $45,000 through the Scotiabank Waterfront Marathon Run for research, diagnosis and support for celiac disease and gluten-re- lated disorders in Canada. This year we aimed to raise $25,000 and far surpassed that goal, rais- ing $33,000 over the month of October!

We set out to “run across Can- Janet Hilson ada” and show that celiac and gluten-related disorders are af- fecting people across the coun- Sarah Hillaby try. We kicked off the campaign from Cape Spear, Newfoundland (the most easterly point in ), we did a half-way point check-in on virtual race day (October 18) from Ontario on the Humber River, and we wrapped up in British Columbia Continued on next page

Sarah Hignell

Far left: Belinda Marcellus

Left: CCA president Janet Bolton walks in support of her husband Bill Otten who has celiac disease 8 | Canadian CELIAC CCA National Director David Congram and CCA Executive Director Melissa Secord

Kimberly Orr on the 31st! Using the hashtag #teamglutenfree on social media channels, walkers and runners showcased a beautiful fall across Canada for training. Here is the race in numbers: z $33,130 raised for celiac re- search, diagnosis and support. z 38 walkers and runners worked together to reach this goal. z 18 industry partners stepped up to help us. Schar took the lead, donating $400 prize packs for the top fundraisers in each category. Total prizing for this event is val- ued at $3,000! z 4 participants did the “Whole Shebang” – 78km each! Davis family

Canadian CELIAC | 9 This year we aimed to raise $25,000 and far surpassed that goal, raising $33,000 over the month of October!

CCA president Janet Bolton cheered on by friends

Lucas Way

Julie Greene At left, Susie Senra Martin u

10 | Canadian CELIAC My celiac journey

MY CELIAC STORY What university student Rosie Fountotos has learned since her diagnosis.

BY RONNILYN PUSTIL

From a very young age, I had developed an intimate relationship with , from going through the medical system so often. I con- sider my childhood pretty unique, as I was diagnosed with hyperthy- roidism at nine years old and had to undergo many surgeries.

Later, at the age of 22, during my undergraduate degree in kinesi- ology, I was diagnosed with celiac disease.

My celiac diagnosis came ap- proximately one year after I had been experiencing low mood, extreme fatigue and absorption issues (with a thyroid medication). Rosie Fountotos If I hadn’t been closely monitored was diagnosed by specialists, I think I would have with celiac been undiagnosed for a long time disease in because I was asymptomatic. university Continued on next page ROSIE FOUNTOTOS SUPPLIED BY PHOTOS

Canadian CELIAC | 11 I soon realized the impact of celiac disease on my quality of life, mental health and personal identity.

Initially, I didn’t think of celiac disease as a life-changing diagno- sis, especially since I already had experience with an autoimmune disease. However, I soon realized the impact of celiac disease on my quality of life, mental health and personal identity. I started encoun- tering many challenges, such as symptom management and adher- ing to a strict gluten-free diet.

I feel that the social impact of ce- liac disease is underestimated. In my experience, my social engage- ment was reduced — I no longer felt comfortable eating at restau- rants, and the majority of social gatherings involve food. When I Infographics from Rosie’s Instagram account @celiacstudentdiaries was diagnosed four years ago, restaurants weren’t as accom- modating as they are now. There were limited gluten-free options (if any), no efforts were made to eliminate cross-contamination and waiters weren’t familiar with celiac disease, which added to the stress of going out.

Celiac disease also affected my university experience. I couldn’t go to school to study without packing a day’s worth of food, due to the lack of gluten-free options on campus. Eventually, I stopped going to class and started listen- ing to my lectures from home as I dealt with abdominal pain from accidental gluten exposures. I Continued on next page

12 | Canadian CELIAC I turned to online communities for support ... the CCA Facebook group and the celiac community on Instagram

tried to accommodate myself as own bubble that what I was dealing tem today fosters inclusivity. With best as I could at that time. with had become my own normal. I an improvement in my overall was out of touch with the average wellbeing and with my symptoms I didn’t know anyone else my age 20-year-old student’s taking less control over my life, who had celiac disease, so I was living experience. When I finally sometimes I honestly forget I have navigating the obstacles on my opened up to other students, I celiac disease! own. I turned to online communi- started to acknowledge the added ties for support, such as the CCA obstacles I face due to celiac dis- Advice for a newly diagnosed Facebook group and the celiac ease. I learned to forgive myself for university student: “Self-com- community on Instagram, and being unable to thrive like my peers passion. We give others way started connecting with other girls — that really helped me to move more compassion than we give with celiac on social media. forward and work on my well-being. ourselves. Personally, I was very hard on myself throughout my In August 2020, I became a CCA I am presently doing my Master of undergraduate years. I wanted to peer supporter and decided to Science at McGill University and achieve so much and wanted to start my own infographic-based In- I am actually now balancing four reach the high academic stan- stagram account: @celiacstudent- chronic illnesses. My resilience dards I had set for myself. How- diaries. I wanted to bring aware- through my past experiences has ever, I fell short at times due to ness to the social, psychological harnessed such growth, which is challenges with my health. and biological aspects of celiac something I would never change. Being diagnosed with a chronic disease and how it affects us. My I’m grateful that my support sys- illness during university can be a Instagram page has allowed me burden and adds to the pressures to reflect on elements of my life you are already trying to manage. and how they’re interconnected. My advice to students is to allow I’ve always been artistic, and I yourself time to grow and to heal decided to channel my creativity physically and mentally from being into infographics. On my page, I diagnosed with a chronic illness. like promoting self-care practices Remember you are on your own and wellness, bringing awareness unique path to success and any to the disease itself, and provid- obstacle you encounter will lead ing support for other university to resilience and growth. Be pa- students with celiac. I don’t want tient and be kind to yourself. Your someone else to have to go journey may be bumpy right now, through this alone. but I promise it will get better.” u

Throughout my undergraduate Stay tuned for our February issue degree, I was so closed into my of the Better Living Gluten Free newsletter, which will focus on Rosie graduating with her managing celiac disease for teens undergraduate degree and university students.

Canadian CELIAC | 13 Finally, GLUTEN-FREE BAGELS WORTH SERVING try them in four fantastic gluten-free flavours

SATISFYING GIVING EVERYONE’S NOTHING & SAVOURY A RUN FAVORITE BEATS A FOR THEIR MONEY CLASSIC

The heroes of gluten-free breakfast and snack hour have arrived: delicious and chewy bagels. Our new Non-GMO Project Verified and Certified Gluten-Free Bagels come in four flavours to please every taste bud: Everything, Blueberry, & Raisin and Plain. We make delicious gluten-free and allergy-friendly food with the taste and texture of the real thing, using the best non-GMO and plant-based ingredients so your customers’ favorite foods are easier to share. The diagnosis

A new diagnosis of celiac disease can be overwhelming. But you can do this! Try these eight steps to start you down the right path. YOU GOT THIS

BY JUSTINE DOWD, PHD AND SELENA DEVRIES, RD

We’ve been there – struggling with digestive pain, bloating, gas, diarrhea, headaches, and skin issues for years. Finally, a reason: celiac disease. This diagnosis may have felt bitter-sweet. Sweet in that you finally have a reason for all of your pain and discom- fort and there is something that you can do to feel better: the gluten-free (GF) diet! Bitter in that you may have to say goodbye to eating foods that you enjoy and the ease of eating anything when out.

Many people feel lost, frustrated and alone after this diagnosis. You are not alone in these feelings – thousands of people are diag- 1. Take time to grieve. For some, a 2. Practice self-compassion. nosed with celiac disease annual- celiac diagnosis is welcomed as a Research shows that among ly. However, up to 47% of people reason for ongoing health issues. adults with celiac disease, with celiac disease still report gas- For others, it can feel devastating. those who practice self-com- DEPOSIT PHOTO trointestinal distress even while Take time to grieve this diagnosis passion report better quality of following a strict GF diet . Here and honour your feelings. Mental life and stricter adherence to a are eight steps to consider if you health care professionals can play GF diet. are newly diagnosed or struggling a key role in helping you to effec- with celiac disease: tively cope with your diagnosis. Continued on next page

Canadian CELIAC | 15 We’ve been there – struggling with digestive pain, bloat- ing, gas, diarrhea, headaches, and skin issues for years.

Here’s how to start practicing excited to try and create a shop- it plays an integral role in healing self-compassion: ping list so you can enjoy home the body after a celiac diagnosis. z Pay attention to your self-talk. cooked meals. Bacteria in the large intestine rely Do you speak to yourself as you on sufficient amounts of fiber for would a close friend? If you notice 5. Communicate your needs. Talk their survival. When bacteria have negative self-talk, start to replace to your family and friends about access to ferment a wide variety negative thoughts with positive your diagnosis so they under- of fibers, they create beneficial ones. Self-kindness is an effective stand why you have to be careful compounds for us including strategy when coping with adver- about what you eat. When your anti-inflammatory components sity. family and friends are well-educat- that help tame inflammation and z Remind yourself that you are ed on meal preparation for celiac strengthen the gut lining. Fiber not alone. Part of being human is disease, it can help you feel more can be found in , vege- that we go through difficult times. at ease and better able to enjoy tables, GF whole , nuts, Reminding yourself that you are social gatherings. seeds, and . Aim not alone in your struggles can re- to consume 25g (women + chil- duce the intensity of the distress 6. Learn the label lingo. Reading dren) upwards to 38g (men + male you feel. labels can cause a lot of stress teenagers) of fibre daily. Tips to z Embrace mindfulness. Mindful- and overwhelm, especially when increase fibre: ness involves relating to our expe- newly diagnosed. In Canada, we z Include fresh at breakfast riences with non-judgment and are fortunate to have strict la- z Aim for two cups of acceptance. Focusing on your belling laws. All ingredients that at both lunch and dinner breathing is an effective way to come from, or are derived from, z Include nuts and seeds, daily. u bring your attention to the present gluten will always be identified moment and reduce rumination. on labels as: , , wheat, Dr. Justine Dowd, PhD, Post-Doctoral (regular) oats and triticale. Fellow, Faculty of Kinesiology, Univer- 3. Connect with others. One of sity of Calgary, is a health behaviour the top predictors of well-being 7. Connect with a registered change specialist, wholistic health with celiac disease is member- dietitian with expertise in ce- coach, diagnosed celiac and aca- ship in a support group. Support liac disease. A dietitian can be demic expert in self-compassion, groups, like the Canadian Ce- your best friend when it comes health behaviour change, and gut liac Association, are important to celiac disease management. health. w: https://www.justinedowd. because they provide current From clearing confusion with label ca/ e: [email protected] evidence-based information on reading, to identifying nutrient disease management and social deficiencies, to helping uncover Selena Devries, RD, is a registered support. lingering symptoms on a GF diet, dietitian, specializing in celiac disease a celiac dietitian can help you feel (after her own diagnosis), and a board 4. Plan for success. Creating a better, faster. member of the Canadian Celiac As- weekly meal plan is a great way sociation. w: www.healthbean.ca to set yourself up for success on 8. Focus on fiber. Fiber is often e: [email protected] a GF diet. Find recipes you are forgotten about on the GF diet but

16 | Canadian CELIAC Ask the expert

MENTAL HEALTH MATTERS Last issue, we asked a psychiatrist about the link between gluten issues and mental health. Here’s part two of the interview.

BY LAURA LACHANCE, , MD, MSC CANDIDATE PSYCHIATRIST AND RESEARCHER, McGILL UNIVERSITY

Is there a proven link between ADHD and gluten? For example, some parents of kids with ADHD believe that gluten exacerbates their child’s symptoms. The research in this field is conflicting. Some studies have found that individuals with ADHD have an increased rate of glu- ten sensitivity while others have not. Two small clinical trials found that gluten-free diets had a positive effect on ADHD symptoms in individuals with celiac disease and ADHD. Another small study found that an elim- ination diet improved ADHD symptoms in children regardless of food sensitivities. Removing gluten from the diet can also lead to a reduction of and ultra-processed food which can have impacts far beyond removing gluten itself. For example, we know that the western diet is a risk factor for mental health symptoms in children across diagnoses.

If you or your child have ADHD and gastrointestinal symptoms, it’s worth talking to your doctor about being investigated for celiac, especially if there is a family history. Alternatively, you may want to consult a dietitian or nutritionist for guidance on trying an elimination diet to see if symptoms improve. Research is generally conducted with groups of people so it can be hard to predict what will work in any one person. That being said, elimination diets can be very challenging and are not feasible for some people.

Is celiac disease linked to more the most well studied example. this antibody may explain why we serious neurological conditions? It has been demonstrated that are seeing so many neurological This is another emerging area of there is another form of anti-tis- symptoms in individuals with celi- research but the answer appears sue transglutaminase that can ac disease. to be yes, with gluten ataxia as attack the brain (anti-TG6) and Continued on next page

Canadian CELIAC | 17 Avoidance feeds anxiety, meaning the more we say no to events involving food, the harder it becomes to say yes.

Some people with celiac feel too anxious to go out at all. They refuse all invitations where food is in- volved. What advice would you have for people who feel this way? Avoidance feeds anxiety, meaning the more we say no to events in- volving food, the harder it becomes to say yes. Start by writing down a list of all the types of invitations or activities that make you feel anx- ious and then rank them from least threatening to most threatening. Start with the least threatening activity and practice it over and over

until it no longer causes anxiety. DEPOSIT PHOTO For example, have friends over to your place for a meal or snack, until restrictions and they’ll adapt too. Self-help resources are a great place you can make it through without to start but won’t be enough for significant anxiety. Work your way When should an individual seek everyone. Check out Anxiety Canada up to going to a restaurant or going professional help for their for self-help resources or BetterHelp to eat at someone else’s home, one anxiety? Is a referral necessary? for workbook or web-based therapy, step at a time. Practice the skills You can start by speaking to your which can be exceptionally valuable above including sharing your food family doctor or a walk-in clinic doc- in the era of COVID-19. restrictions in advance and practic- tor about your anxiety. Tell them how ing “gluten-refusal skills”. If going to it is impacting your life, whether it be What signs or symptoms of de- someone else’s home and you are impacting your functioning, caus- pression or anxiety should a loved worried that it will not be safe, offer ing severe distress, or causing you one or caregiver be looking for? to bring something that you know physical symptoms like insomnia, Anxiety becomes a disorder when it you can eat. If you are unsure what racing heart, rapid breathing, muscle is excessive and out of control, and you will be walking into, it may be tension, difficulty concentrating and leads to a reduction in functioning best not to arrive hungry. Avoid- fatigue. Cognitive Behaviour Ther- or mental distress. Anxiety can lead ing gluten when you have celiac apy (CBT) is generally the first-line to panic attacks or other physical disease is a marathon not a sprint. treatment for anxiety and it can be symptoms such as shortness of We know that social support and delivered by a number of mental breath, heart palpitations, head- relationships are critical for health, health professionals depending on aches and insomnia. Untreated so don’t throw away that important the province you live in. Sometimes anxiety can cause depression resource over a food restriction. you need a referral to see a thera- and individuals who are depressed Over time, things will get easier. pist, but other times you can access are also prone to developing People will get used to your food the private system without one. Continued on next page

18 | Canadian CELIAC Check out ... self-help resources ... workbook or web- based therapy ... valuable in the era of COVID-19.

increased anxiety symptoms. What resources do you recom- https://www.anxietycanada.com/ Depression becomes worrisome mend to visit to get more infor- z Cognitive Behaviour Therapy when symptoms such as low mood mation on this topic? workbooks and reduced pleasure or motiva- The Anxiety and Worry Workbook tion to do things that the person z Web-based Cognitive Behaviour by Clark and Beck previously enjoyed persist beyond Therapy (CBT) Mind Over Mood by Greenberger two weeks. Hopelessness and https://www.mindbeacon.com/ and Padesky suicidal thoughts are symptoms of https://www.betterhelp.com/ z Meditation apps severe depression and clear indi- z General information about anxi- Ten Percent Happier cations to seek treatment. ety and coping strategies Calm u

SUNDAY, NOVEMBER 15, 2020 www.ccaconference.ca

Join us for an afternoon of FREE world-class virtual education on celiac disease and gluten disorders. Register for a chance to win prizes! LEAD PARTNERS Takeda, Proventionbio and Schar

Canadian CELIAC | 19 Growing up celiac

LITTLE HELPERS

Even kids can be part of the fight to find a cure for celiac disease.

BY ADAM WEINMANN

This year, people of all ages and stages joined the Scotiabank Run, including kids growing up celiac. Kitchener actor, dancer and singer Lucas Way was diag- nosed two years age of 8. This year, he stepped up in the 12 and under category of the run, and beat his goal of raising $1,000! Here’s what he had to say about his reasons for joining the run:

“I’ve been training hard to run a 5K and decided to participate in this fundraising event for the Canadian Celiac Association to help find a cure for celiac dis-

ease. My sister, Ella, and I have WAY ELISA BY PHOTO had celiac disease since we were 8 and 11 and my mom has it restaurants are safe, bringing ness sometimes even when I’ve too as do lots of my other fam- my own food to birthday parties done my best to make sure my ily members. Celiac can cause and peoples’ houses for dinner food is safe. Thank you for any serious health issues if you don’t because it’s almost impossible contribution you can make to manage it. Managing it properly to avoid cross-contamination help eliminate celiac disease and means not being able to eat out and then dealing with bad upset its complications. much at all because not many stomachs, headaches and tired- Xo Lucas”

20 | Canadian CELIAC Managing your disease

The pain of accidental glutening is no joke. Other than waiting it out, is there anything that helps?

It’s bound to happen at some point: you get three bites into your UH OH! I GOT meal at a restaurant before realiz- ing that the waiter mixed up your GLUTENED! order. Accidental glutening is no joke, and when the pain, nau- sea and diarrhea get started, it’s normal to start wondering if there might be something – anything!

DEPOSIT PHOTO – that might make you feel better faster.

There are all kinds of myths, an- ecdotes and remedies out there, but what actually works when you’ve been exposed to gluten? We asked two experts on our CCA Professional Advisory Council – a doctor and a registered dietitian –

DR. KIMBERLEY BENDER:

The bad news: in general, if we ingest gluten by accident in celiac disease, the only thing that really affects resolution of symptoms is time, rest and avoidance of further gluten. Hydration with water is important to avoid dehydration, especially if the symptoms that Continued on next page

Canadian CELIAC | 21 There are all kinds of ... remedies out there, but what actually works when you’ve been exposed to gluten?

are experienced are digestive in nature (ie vomiting/diarrhea). Gravol (either orally or rectal- ly) does help with symptoms of nausea and vomiting, but it has sedative effects, causing fatigue and lethargy. It has been suggest- ed that activated charcoal may help by binding gluten and there- fore relieving symptoms; however, studies show that this is not the case and, in fact, it can cause side effects including constipation and black stool. Probiotics may help with symptoms, although evi- dence is not strong.

The good news: if gluten is only ingested rarely, there are no long term implications and symptoms generally resolve fairly quickly within one to three days, with se- vere symptoms settling within six infographic from Rosie Fountotos’s Instagram account to 12 hours. @celiacstudentdiaries

Dr Kimberley Bender, Medical Direc- ful. You may have lost fluids if you cause no harm, so it can’t hurt to tor - Restorative Care Unit - St Peter’s have diarrhea, so ensuring you try. Hospital, Family Physician/Hospital- are well hydrated is important. 3. Limit or avoid lactose: Partic- ist/Care of the Elderly Other suggestions which may be ularly if you have diarrhea, you helpful, but are not guaranteed to may temporarily lose your lactase DAYNA WEITEN, RD: work for everyone include: enzyme, so limit or avoid lactose for 1-2 weeks. If you have unintentionally eaten 1. Peppermint or tea: gluten, there is no one remedy These may have a relaxing effect Finally, having small meals more that will help to ease the symp- on your intestine. Peppermint is often and going for walks are toms you may have. Each person also known to aggravate reflux, both helpful for digestion and may may find that different sugges- however, so if you have that as a improve symptoms. u tions work best for them. symptom, avoid peppermint. Drinking more water than usual is 2. Digestive enzymes: There is no Dayna Weiten, Registered Dietitian, one strategy that should be help- evidence they help, but they also Food for You Nutrition Consulting

22 | Canadian CELIAC Thyroid and celiac

Endocrinologist checking thyroid with ultrasound

DEPOSIT PHOTO

THE THYROID – CELIAC CONNECTION Connecting the dots between celiac disease and thyroid diseases

BY DEBORA CHOI, BSC FN, MAN

Celiac disease (CD) affects 1% of western society, while thyroid disease affects approximately 10% of Canadi- ans. Both are hereditary autoimmune diseases and it’s not uncommon for people with celiac disease to also be diagnosed with thyroid disease. In fact, among those with thyroid disorders, studies have shown a between 2-5% have celiac disease. Similarly, studies have also shown that individuals with CD are about four times more likely to be diagnosed with a thyroid disorder, compared to the general public. The reason for such coex- istence is partly because similar genes are involved in a variety of autoimmune conditions. Therefore, having one autoimmune disease increases the risk of getting a second or a third one. Despite the high prevalence of the two diseases coexisting, celiac doesn’t cause thyroid disease or vice versa. Continued on next page

Canadian CELIAC | 23 CD and thyroid disease are not mutually causative – in other words, one does not cause the other.

So what exactly is thyroid dis- ease? Thyroid disease is any illness caused by a dysfunction of the thyroid gland, the small butterfly-shaped organ located in the middle of the lower neck. Without us even being aware of it, the thyroid is quietly responsi- ble for releasing hormones which help control several essential body functions such as metabo- lism, temperature, hair and skin Martha Henderson growth, weight, and energy level. and Patty Massel When there is a disorder in the thyroid, it can lead to too much DEPOSIT ILLUSTRATION of these hormones (hyperthyroid- llustration of the location of the thyroid gland, a small butterfly- ism) or too little (hypothyroidism). shaped organ located in the middle of the lower neck. Grave’s disease and Hashimoto’s thyroiditis are the most common thyroid disease and vice versa. small intestine will start to heal. As autoimmune conditions that In fact, it is recommended that a result, absorption of nutrients cause hyperthyroidism and hypo- all patients with CD have their and medications will improve, and thyroidism, respectively. Grave’s thyroid function assessed with a less medication may be required. disease causes symptoms like blood test every 1-2 years. This If one has an autoimmune thyroid difficulty sleeping, tremors, palpi- is true even for those with no disorder and medication does not tations, weight loss and diarrhea, unusual symptoms, as testing for seem to be effective, screening while Hashimoto’s thyroiditis thyroid function can diagnose the for CD should be considered, can cause fatigue, feeling cold, problem before any symptoms because it may be affecting the excessive weight gain, constipa- develop. It is also important to amount of medication being ab- tion and dry skin. If left untreated, note that, despite both conditions sorbed in the body. these disorders can lead to heart being autoimmune in nature, failure, muscle weakness, infer- following a gluten-free diet will not What it’s like living with both tility, cognitive dysfunction, and help treat thyroid disease – only diseases: Carolyne was first even death. medication can do that. That said, diagnosed with Grave’s disease if you have an autoimmune thy- (autoimmune hyperthyroidism) Screening and diagnosis: CD and roid disorder and are medicated in early 2013. She’d experienced thyroid disease are not mutually for it, and you’re later diagnosed unexplained weight loss and was causative – in other words, one with celiac, going gluten-free may suffering from severe anxiety and does not cause the other. Howev- alter the amount of medication palpitations. Her doctor ordered a er, people with celiac can benefit you need. Why? When you stop full thyroid panel and she was from screening for autoimmune eating gluten, the lining of the Continued on next page

24 | Canadian CELIAC sent to an endocrinologist, where controlled. After my celiac di- or just an overall issue. I have she was officially diagnosed. agnosis, I immediately changed mobility issues because I also my diet to eliminate all sources have multiple sclerosis, so I am In 2017, Carolyne experienced of gluten and avoid cross-con- no longer working and I spend some vague but unusual symp- tamination as much as humanly a lot of time at home, which was toms, and after blood work or- possible. I still eat out but limit not the case prior to my health dered by her family doctor, she myself to restaurants that I feel issues. The thyroid issues are ful- was diagnosed with celiac dis- are safe for me: those that have ly controlled so I don’t find those ease. The diagnosis came to her well-established protocols to try affecting my life at the moment. as a complete shock, because to avoid cross-contamination and The celiac, however, does make she wasn’t experiencing an upset offer gluten-free choices. I still it more challenging in social set- stomach. ask lots of questions even after tings. I can’t just meet someone three years. for dessert or a meal unless I can Q: How did things change for choose the restaurant and some- you when you already had Q: What are some of the difficul- times that isn’t possible. I can’t Grave’s and you were then diag- ties you face daily, and how do just eat somewhere quick while I nosed with celiac? you handle it? am out for the day, which makes C: I continued to take two sup- C: I still suffer from anxiety but things challenging. But with a plements daily to help control am unsure if that is related to any little planning, I don’t find I am the Grave’s disease and it is well of my health conditions directly missing out too much. u

DONATE NOW at https://donatecar.ca/org/charitypage/donate.php?charity=CdnCeliac and you will receive an income tax receipt from the CCA after your car donation is complete!

Canadian CELIAC | 25 Ask an allergist

THE ALLERGY ARGUMENT Some people insist that celiac disease is just like a food allergy. It’s not—but how similar are they? We asked an allergist.

BY WENDY GOULD, M.D., ALLERGY & IMMUNOLOGY

As an allergist, I see patients with food allergies on a regular basis. A common request in my office is to know if we can skin test for a “gluten allergy.” Gluten ingestion has been linked to many symptoms, both gastrointestinal (GI) and non-GI, and avoidance often makes many people feel better. Although they are DEPOSIT PHOTO both immune-mediated, celiac disease and IgE-mediated food allergy (the type of immediate, potentially life-threatening reaction people normally equate with the word “allergy”) are not the same thing. There are some key differences, both in clinical presentation and in evaluation.Continued on next page

26 | Canadian CELIAC Celiac disease is a disease that affects the small intestine and occurs due to an immune response triggered by gluten and directed against one’s own body as opposed to a foreign substance. This is called autoimmu- nity. In contrast, IgE- (immunoglobulin E, an antibody associated with allergic disease) mediated food aller- gy involves an immune response to a protein in a food (i.e., not against yourself), which can lead to acute life-threatening reactions. This is known as immediate hypersensitivity.

Additional facts: condition. be more common than celiac dis- z Celiac disease occurs in 0.5 to 1 z Patients with celiac disease ease and includes the same symp- percent of the population. need to avoid all grains containing toms; however, blood work and z Small intestinal changes in celiac gluten. endoscopy are negative/normal. It disease include villous atrophy z Patients with wheat or other is not thought to be autoimmune (flattening of the intestinal mem- grain allergy can often eat other and it is not associated with the branes that lead to difficulty in grains without adverse reactions. complications of celiac disease. digestion/absorption) that can z Wheat allergy is found to be z Food intolerance is associated resolve within weeks to months outgrown by ~ 29% of patients by with gastrointestinal symptoms on a gluten-free diet. age 4 and ~65% by age 12. without risk for anaphylaxis and it z Celiac disease is a life-long z Non-celiac gluten sensitivity may is not immune-mediated. u

CELIAC IGE-MEDIATED FOOD ALLERGY

IMMUNE MECHANISM: z Autoimmune, immune re z IgE-mediated against a gluten sponse directed against self foreign antigen/protein

CAUSES: z Gluten – found in wheat, z Most common: cow’s milk, barley, rye, triticale egg, wheat, soy, , tree nuts, finned ,

SYMPTOMS: z GI: diarrhea, pain, weight loss z Hives, swelling, sneezing z NON-GI: rash, osteoporosis, iron nasal congestion, wheezing, deficiency, enamel defects vomiting, loss of consciousness

TESTING/EVALUATION: z Blood work: IgA (or IgG) tissue z Skin testing to food allergen transglutaminase (tTG), gliadin z Blood work (ImmunoCAP) deamidated peptide loss of consciousness z Endoscopy and biopsy of small z Supervised oral food challenge intestine

TREATMENT: z Avoidance of grains z Avoidance of triggering food containing gluten z Epinephrine auto-injector

Canadian CELIAC | 27 Living Alive Granola

THE GRANOLA IN THE ROUGH

The inception of Living Alive Granola is a whirlwind story about Stephanie Brown’s love for her children, the wholesome, inexpensive ingredients that grow in Elgin County, and a lesson that everything in

PHOTOS SUPPLIED BY LIVING ALIVE GRANOLA SUPPLIED BY PHOTOS life is accumulative

Joe Preston and Stephanie Brown, business partners 28| Canadian CELIAC ... I was bipolar. Living Alive Granola came to be ... be- cause I wanted to show the world I could do something

BY SARAH MARIOTTI sick, and I wanted to show the world that I could do something…I “If you think [mental illness] isn’t figured, if I can work for myself, I talked about now, it definitely won’t get fired. [A lot of employ- wasn’t in 1989.” Stephanie Brown ers] don’t understand why you had her first breakdown when she count the money wrong — your was 14, and remembers it like it brain is going faster than you can was yesterday. Now in her forties, keep up.” Brown is determined to change the way people with mental illness The final component that brought are seen. In fact, her bipolar disor- the company to fruition was Joe der is the very reason her gluten Preston, a former Ontario Mem- free granola company, Living Alive ber of Parliament who offered to Granola, exists today. invest in the business during a serendipitous moment for Brown. “I was a single mom of [three She had just finished singing — young kids]; I wanted them to her artistic side, a story in itself — eat real food. And you can’t help in front of a crowd, for the Prime but live in Elmer, Ontario and not Minister of Canada. Just minutes get caught up in how to make a after, the two started to talk and perfect pie. I was always in the he expressed an interest in her kitchen. Every day when [my kids] nascent granola company. “I want would come home from school, I to inspire others and share that would have a fresh batch of whole everything you do is accumula- wheat chocolate chip cookies or tive,” Brown shares. Preston is warm, out-of-the-oven now Brown’s business partner bread. I learned how to utilize and the co-founder of Living Alive the rottenest , because Granola. Since their partnership, they make the tastiest banana the two have built a brand from bread,” shares Brown. “I would do the ground up, initializing in anything at that time in my life to farmer’s markets in the heart of make sure they didn’t know we St. Thomas and London, Ontario, were poor.” and now selling in large groceries like Loblaws and Metro. Today Brown says she was unable to their reach offers safe and delight- hold a job when her kids were ful snacks to Canadians who are little. “I couldn’t admit to myself living off a gluten free diet…or any- that I was bipolar. Living Alive one who appreciates a delicious, Granola came to be because I did chewy granola. not want anyone to know I was Continued on next page

Canadian CELIAC | 29 Illness doesn’t care if you’re rich or poor,” referring to both celiac disease and any kind of mental illness.

“It’s almost like cookie dough,” latter, ten cents from every Living says Brown who describes the gra- Alive Granola bag is donated to nola as a cookie out of the oven. local mental health projects. “The Available in two noteworthy fla- ten cents are my way of saying, vours – honey almond granola and ‘Know that you are not alone,’” maple walnut granola – the entire Brown testifies, adding that since Living Alive Granola product line is the COVID-19 pandemic struck, made with pure protocol oats, sans she has been making it a point to additives and preservatives. ask every one of her employees how they are doing. To Brown and Preston, keeping To honour mental illness, ten prices affordable is just as im- “The only difference between you cents from every Living Alive portant as ensuring their facility and I is that I go knock on doors Granola bag is donated to local is certified gluten free. “Illness that no one’s knocking on, and the mental health projects. doesn’t care if you’re rich or funny thing is that people answer poor,” says Brown, referring to the door,” she remarks. u HOLIDAY both celiac disease and any kind survival guide of mental illness. To honour the https://livingalivegranola.ca CCA ANNUAL holiday guide

COMING SOON! DECEMBER 10

Tips and recipes for your family.

SPONSORED BY NAIRN’S

30 | Canadian CELIAC New establishment

Mom’s Own , one of owner Chef Liz Pietrzak’s favourite soups,

PHOTOS SUPPLIED BY SOUPS FROM ME TO YOU SENSATIONAL High-quality, fresh and delicious soups SOUPS can now be yours – completely gluten free

BY NICOLE COX There are a few unmistakable signs that autumn is really here: the crunch of fall leaves, on the ta- ble, at the door and crisp, cool evening air. We start to bundle up and settle down for the colder months ahead. Adding to the warmth and coziness of the fall season – a delicious bowl of , or chili. As celiac consumers continue to look for high-quality, delicious, accessible and certified food options, it is helpful to know which companies offer fully gluten-free products. Looking for gluten-free soups is no ex- ception! One such company offering a variety of delicious options is Continued on next page

Canadian CELIAC | 31 All of our products are ... gluten free, have no preserva- tives and are low in sodium ... many offer vegan options.

Clockwise from bottom left: owner and chef of Soups from Me to You, Liz Pietrzak; Bone and Southwest Spice Rub.

family-owned Soups from Me to to You is all about bringing robust, You. Made in Ontario, Soups from wholesome taste from our kitchen Me to You offers high-quality, fresh to yours! ingredients from a dedicated glu- ten-free facility! You offer gluten-free options within your list of soups and Owner Chef Liz Pietrzak tells chilis. Why is it important to us more about their gluten-free you for your company to do so? offerings: I have been preparing home

Tell us a little more about Soups cooked meals from scratch my YOU SOUPS FROM ME TO SUPPLIED BY PHOTOS from Me to You: At Soups from entire life. This first started with Me to You, we use locally sourced traditional Polish/Ukrainian foods vegetables and to provide that I made with my mom. As our a wide selection of delicious family grew, it included cooking soups, chowder and chilis. All of for relatives and friends who our products are healthy, gluten have allergies, are celiacs and free, have no preservatives and vegans. Cooking for these peo- are low in sodium, and many offer ple then became a regular way of vegan options. All of our products cooking for me. Our website now come ready-made, from freezer offers soups, spice mixes, chilis to table – just heat, serve and and for many different enjoy. We have a recipe for every diet types, including vegan and occasion or need! Soups From Me Continued on next page ...we offer a full list of our wholesome ingredients and consumers will ... find the GF label on all of our packaging

offer a full list of our wholesome ingredients and consumers will easily find the GF label on all of our packaging. In addition, all our products carry the new Ontario Made designation, ensuring they are all locally made.

What are some of your personal PHOTO SUPPLIED BY SOUPS FROM ME TO YOU SOUPS FROM ME TO SUPPLIED BY PHOTO favourite gluten-free products that you offer? I like them all! But if I had to choose, I would say a few of my personal favorites are Mom’s Own Borscht, Moroccan Asparagus Soup Soup, Nonna’s and my new Curried Butternut Squash. Plus, gluten, dairy, nightshade and - are safe to consume, and consis- I do love all my of chilis! free diets. tently meet all gluten-free quality and regulatory requirements. Finally, where can our Celiac Are all of the ingredients in Our kitchen is certified as a ded- readers find your delicious soups? your gluten-free products cer- icated gluten-free facility and we We sell our soups online, with tified gluten free, and are they have obtained the Gluten-Free pickups available Monday through safe from cross-contamination? Dedicated certification for our Thursday. We also deliver in our How can our celiac readers feel products. local area. Additionally, our soups assured that the products meet can be found in a variety of stores their gluten free needs? We ad- Does the packaging clearly state and farmers markets – for a full here to, and abide by, strict pro- all ingredients? Does it carry a list of where to find our delicious cesses and controls to ensure gluten-free symbol and if so, products, you can visit our website: our kitchen and products is it easy to identify? Yes, we www.soupsfrommetoyou.com.

A TIP FROM CHEF LIZ ON THICKENERS

Our gourmet company Soups From the different soups and chilis my dish); and to thicken our chilis ( Me To You features all gluten-free company offers. In our Roasted and vegan), we use corn starch. Our products. While trying many differ- Gourmet Mushroom Soup, we use featured recipe Curried Butternut ent gluten-free thickeners for soups diced ; in our Roasted Squash Soup on the next page, and dishes, I have found many , we use uses roasted squash as its thicken- great substitutes for flour. I use a flour (this flour does not take away er. Instructions for roasting squash variety of gluten-free thickeners in or add any unwanted flavour to the are found in the recipe instructions.

Canadian CELIAC | 33 CHEF LIZ’S RECIPE PHOTO SUPPLIED BY SOUPS FROM ME TO YOU SOUPS FROM ME TO SUPPLIED BY PHOTO CURRIED BUTTERNUT SOUP

This Curry Butternut Squash soup is creamy, full of flavour and subtly infused with warming curry and – a perfect soup for chilly weather. Enjoy it topped with toasted seeds!

INGREDIENTS z 1 tbsp avocado oil 1 tbsp oil) (14oz) z 2 medium , thinly diced z 1 pinch each salt & z 3 cups broth z 2 garlic, minced z 1 ½ tbsp curry powder z 1 tbsp maple syrup z 6 cups roasted cubed butternut z ¼ tsp ground cinnamon z 2 tsp Red Thai Curry Paste (vegan) squash (4 lb butternut squash, z 1x 400mL can light coconut milk Continued on next page

34 | Canadian CELIAC INSTRUCTIONS

1. Preheat the oven to 400 de- squash flesh into a bowl. Set minutes. grees Fahrenheit and line a aside. 9. Taste and adjust , rimmed baking sheet with parch- 4. Heat a large pot over medium adding more curry powder, ment paper. Place butternut heat. salt, or maple syrup as desired. squash (halved vertically and 5. Once hot, add oil, shallots, Continue cooking for a few seeds removed) on the pan. and garlic. Sauté for 2 minutes, more minutes over medium heat. Drizzle each half with just enough stirring frequently. 10. Use an immersion blender to lightly coat the squash 6. Add butternut squash and and purée on high until creamy on the inside (about ½ tsp each). season with salt, pepper, curry and smooth. Rub the oil over the inside of the powder, and ground cinnamon. 11. This soup can be served hot or squash. Stir to coat squash. Then cover cold, as is or with your choice of 2. Turn the squash face down and and cook for 4 minutes, stirring garnishes. u roast until it is tender and com- occasionally. pletely cooked, about 45 min- 7. Add coconut milk, vegetable utes. Set the squash aside until broth, maple syrup, and Red Thai its cool enough to handle, about Curry Paste.

15 minutes. 8. Bring to a low boil over me- DEPOSIT PHOTOS 3. Once cooled, use a large dium heat. Then reduce heat to spoon to scoop the butternut low, cover, and simmer for 20 Founder’s HouseinNS 36 |Canadian CELIAC 4. Bake for12minutes. will be! thinner yougetit,thecrispier it lined withparchmentpaper. The as possibleontoabaking sheet 3. Spread themixtureas thinly sticky. or so, forchiaseedstobecome bowl, andallowtosit10minutes 2. Mixalltheingredientsinalarge 1. Preheatovento300degrees. z z z z z z z INGREDIENTS INSTRUCTIONS ¼tspfinesalt 1largeclovegarlic,grated 1cupwater ½cupwhitesesameseeds ½cuppumpkinseeds ½cupsunflowerseeds ½cupchiaseeds Founder’s Househasgraciouslyprovidedarecipeforgluten-freechia crackers andapricotchutney

“elevated ruraldining–rootedinseaandsoil.” Theirseasonalmenu,inspiredbythearea’s terrain CHIA CRACKERS WITH and history, incorporateslocally-sourcedingredientstocreateaculinaryexperiencethatwon APRICOT CHUTNEY Located inNovaScotia’s scenicAnnapolisValley, Founder’s House provides CHIACRACKERS the establishmentaFineDiningAward in2019. out burning). or so, until ithasanicesnap(with - tinue bakingforanother 6 minutes 5. Flip the sheetof seeds andcon- that fitstheseasonperfectly. Continued on nextpage ly-shaped, cracker-sized pieces. cool andbreakintoirregular - 6. Remove fromoven, allowto

PHOTO BY ZACHARY BLEASE APRICOT CHUTNEY

Makes 6 half-pint (8oz) jars.

INGREDIENTS z 1 kg (7½ cups) dried apricots, roughly chopped z 500 g (3¼ cups) sultanas (golden raisins) z 500 g (3¼ cups) Medjool dates, roughly chopped z 250 g (1 cup, packed) brown sugar z 3 tbsp ginger (fresh, grated) z 1 tbsp seeds z ¼ tbsp z 750mL (3 cups) white wine vinegar z 500mL (2 cups) water z 1 ½ tbsp salt z 3 tbsp mustard seed z ½ tsp chili powder

INSTRUCTIONS

1. Mix the sugar, vinegar and water in a large pot over medium heat.

2. Once sugar is dissolved, add BLEASE ZACHARY BY PHOTO the rest of the ingredients (apricot, sultanas, dates, ginger, coriander, 4. Divide into jars and refrigerate. nutmeg, salt, mustard seed and chili powder). Chutney should last up to 3. Turn the stove down to very low 6 months stored in the heat, and simmer until the chutney refrigerator, or you can can it for is thick (just how thick is up to a longer shelf life. u you).

Canadian CELIAC | 37 DELICIOUS Gluten-Free CLASSIC DINNER ROLLS

Roll right into holiday season.

Get any occasion rolling with our soft and versatile Classic Dinner Rolls. Gluten-free and allergy-friendly, everyone will reach for more. Seconds, anyone?

Speaking of seconds, download your FREE Second Helpings holiday recipe book for gluten-free foodies. 16 plant- based recipes. All gluten-free.

Get the recipe book. New research study

THE PROACTIVE CELIAC STUDY New research study could lead to a treatment for celiac disease.

PROACTIVE Celiac Study: A POTENTIAL THERAPEUTIC FOR NON-RESPONSIVE CELIAC DISEASE ROSIE FOUNTOTOS, CSEP-CEP, MSC. (C), DIVISION OF EXPERIMENTAL MEDICINE, MCGILL UNIVERSITY

With the evidence collected, PRV-015 has the potential to become the first celiac disease therapeutic ever approved.

KEY TAKEAWAYS z Run by Provention Bio, the PROACTIVE Celiac z Findings suggests that while PRV-015 may not al- Study will examine the usefulness of varying dos- low those with celiac disease to intentionally eat es of the drug PRV-015 in patients diagnosed with gluten, it could reduce the side effects of uninten- non-responsive celiac disease. tional cross-contamination while on a gluten-free diet. z Presently, PRV-015 is the only drug in a phase 2a study shown to simultaneously reduce both symp- z Researchers will be recruiting patients with celiac toms and inflammation in individuals with celiac dis- disease in Canada later this year. Stay tuned to learn ease, and has the potential to become the first celiac about possible participation in the trial soon! disease therapeutic ever approved. Continued on next page

Canadian CELIAC | 39 Study will examine the usefulness of varying doses of the drug PRV-015 in patients diagnosed with non-responsive celiac disease.

In late August 2020, Provention Bio, in partnership with Amgen, announced the initiation of phase 2b of the PROACTIVE (PROvention Amgen Celiac ProtecTIVE) Celiac Study. The clinical trial will examine the usefulness of multiple doses of the drug PRV-015 in patients diagnosed with non-responsive celiac disease (NRCD). NRCD is defined by persisting symptoms and intestinal inflammation characteristic of celiac disease despite being on a gluten-free diet, and makes up approximately 30-50% of those with celiac disease1 The researchers will assess symptom severity of celiac disease in those who receive one of three doses of the drug compared to those who receive a placebo.

Interleukin-15 (IL-15) is a chemical messenger that plays a central role in the immune response to gluten in people with celiac disease. It has been shown to cause destruction and inflammation of the gut lining which is characteristic of the disease2. PRV-015 is the first invest- igational antibody designed to block the IL-15 immune response and has been demonstrated to limit inflammation and reduce symptoms triggered by gluten in those with CD.

Provention Bio, Inc. is a New Jersey-based biopharmaceu- tical company that aims to create new therapies to intercept and prevent chronic autoimmune diseases such as type 1 diabetes, lupus and celiac disease. Provention aims to reduce the overall burden of autoimmune diseases and improve individuals’ quality of life. The company has developed therapeutics including teplizumab, their most advanced-stage drug, which has been shown to delay the onset of type 1 diabetes in at-risk patients. After promising findings so far, Provention is highly motivated to broaden their research with PRV-015 as a therapeutic for those with NRCD.

In the previous phase 2a study3, PRV-015 (also known as AMG-714) was evaluated in a randomized clinical trial in 63 adults with celiac dis- ease at three sites in . Patients received one of two dosages of PRV-015 or a placebo for 12 weeks. While receiving a gluten challenge (daily exposure to gluten in the form of a cookie), PRV-015 did not prevent damage to the intestine. Continued on next page

40| Canadian CELIAC DEPOSIT PHOTO Researchers will be recruiting patients with celiac disease in Can- ada ... this year. Stay tuned to learn about possible participation ...

damaging effects of unintentional exposure to gluten could therefore considerably improve quality of life However, patients did report ers will recruit 220 patients with for people managing celiac dis- fewer symptoms and showed NRCD at multiple international ease. As the clinical investigation of reduced inflammation. In a smaller sites across the , PRV-015 proceeds, we can appre- group of subjects who did not un- and Canada later this year. ciate the efforts made thus far and dergo the gluten challenge, there The trial is registered at Clinical- the implications of these findings was also evidence of improve- Trials.gov, NCT04424927. for celiac disease research. ment in intestinal damage and fewer symptoms. These findings To date, there have only been We are observing research efforts suggest that while PRV-015 may two other therapeutics for celiac made towards improving quality not allow those with celiac dis- disease that have progressed to of life and disease management ease to intentionally eat gluten, it phase 2b. This phase precedes for individuals with celiac disease. could reduce the side effects of phase 3, a central step in drug CCA is glad to share such inno- unintentional cross-contamina- development that further studies vations with the celiac community tion while on a gluten-free diet. a drug’s benefit in a much larger and look forward to sharing future Importantly, safety data from this population. Presently, PRV-015 is communications from Provention phase 2a study and from previous the only drug in a phase 2a study Bio. Canadians with celiac disease studies with the drug suggest an shown to simultaneously reduce could volunteer to be involved in acceptable safety profile. symptoms and inflammation trig- the PROACTIVE Celiac Study in gered by gluten in individuals with the near future. Stay tuned for up- The authors provided what is celiac disease. With the evidence coming CCA newsletters to learn referred to as “proof of concept” collected, PRV-015 has the poten- more about registration! u in their phase 2a study, indicat- tial to become the first celiac dis- REFERENCES: ing PRV-015 effectively reduced ease therapeutic ever approved. 1. Penny, H. A., Baggus, E., Rej, A., symptoms in individuals with Snowden, J. A., & Sanders, D. S. celiac disease. Researchers will The developments from Provention (2020). Non-Responsive Coeliac Dis- now proceed to phase 2b, where Bio and the new PROACTIVE Celiac ease: A Comprehensive Review from the NHS National Centre for they will specifically assess Study have provided people with Refractory Coeliac Disease. Nutrients, optimal dosing of PRV-015. The celiac disease hope for therapeu- 12(1), 216. PROACTIVE team will rigorously tics in the near future. Unintentional 2. Abadie V, et al. IL-15, gluten and assess the efficacy and safety of ingestion of gluten is inevitable HLA-DQ8 drive tissue destruction in coeliac disease. Nature. 2020; three different doses compared to through exposure by cross contam- 578(7796):600-604 placebo in individuals with NRCD ination or hidden sources in food or 3. Lähdeaho ML, et. al. Safety and over a six-month period. The medication but the gluten-free diet efficacy of AMG 714 in adults with overarching goal is to test PRV- is currently the only recommended coeliac disease exposed to gluten challenge: a phase 2a, randomised, 015 in a more realistic context by treatment for celiac disease. There double-blind, placebo-controlled having individuals maintain their are no approved therapeutics. A study. Lancet Gastroenterol Hepatol. usual gluten-freew diet. Research- treatment that could reduce the 2019;4(12):948-959.

Canadian CELIAC | 41 COVID riskresearch CONNECTION THE COVID CCA Professional AdvisoryCouncil(PAC) weighsinontheearly introductionofgluten in children–clickhere ed. TheCanadianceliaccommu - over 18,000 individualsparticipat- to completeanonlinesurveyand COVID-19. Patients wereasked at anincreasedriskofcontracting patients withself-reportedCDare tional studytoevaluatewhether tigators conductedacross-sec- answer thisquestion,theinves- relates totheriskofCOVID-19. To ever, itisnotyetknownhowCD of respiratoryinfections.How- between CDandincreasedrisk studies havefoundassociations edge ofCOVID-19. Anumber of and theirexperienceknowl- of patientswithceliacdisease(CD) the world,participatedinastudy many patientorganizationsacross This pastspring,CCA, alongwith BIRCHALL-SPENCER BY MEREDITH coronavirus? Researchers finally have ananswer. withceliac have people Do riskofcontracting an increased 42 |Canadian CELIAC For updates on latestresearch,visithttps://www.celiac.ca/news-events/research-news/

yond those recommended to the yond thoserecommended tothe cautions topreventexposure, be- do notneedtotake additionalpre- of contractingCOVID-19 andlikely with CDdonothaveasimilarrisk The studyconcludedthatpeople thank themfortheirparticipation. of participantsinthestudyandwe nity representedthevastmajority MORE RESEARCH

and Hepatology. journal will bepublishedshortly, inthe changes overtime. Thisresearch risk ofcontractingCOVID-19 inCD ers betterunderstandwhetherthe longer timespanwillhelpresearch- ing repeatedmeasurementsovera general public.Furtherstudiesus- Clinical Gastroenterology Clinical Gastroenterology

DEPOSIT PHOTO In my opinion

COMFORT IN BAD TIMES

BY JANET DALZIEL OPINION

Closing down from the sum- mer, after enjoying our beautiful Ca- nadian fall, and getting ready for winter – wait, it’s already here? – is a sad time for many. Add in the current long- term pandemic restrictions, loss of life, political upheaval, climate disruption and economic hardship and we have a recipe for even everyone a lift. Give somebody an greater anxiety and sadness. I am unexpected break. sure that I am not alone in thinking that this year cannot end soon Be kind, to others Do something different and enough. That’s what I want “2020 and yourself. creative, or dive into learning hindsight” to mean. something new. It can be practical Every time. or not. You don’t have to master In the meantime, since there is so anything; just enjoy the personal much outside of our immediate not original to me, just collected growth and distraction. control, how can we help our- over time from wise souls. The selves find comfort and satisfac- first few are general, the later Find ways to stay in touch with tion in our own little bubbles to ones more specific to those of us friends and family, near and far. If counteract the prevailing sense on a GF regime. zoom calls aren’t always satisfy- of helplessness we feel in dealing ing, play a board game together with the outside world? I have no Be kind, to others and yourself. online or watch a favourite show magic answers of course but a Every time. It really does pay off. together while connected. few ideas that help me. They are Random acts of kindness give Continued on next page

Canadian CELIAC | 43 Finally, if you have your health and your friends and family are fine, be thankful, be grateful.

Use the good , wear the I used to work with someone think. No need to fuss over gro- nice clothes, make an effort who always ate his dessert first. I cery shopping, meal planning, or every once in a while. It’s a gift to thought it was weird. Now I think wonder what to put in the lunch yourself and your family to make we might all enjoy a less rigid bag. It wasn’t laziness or lack of an occasion and reminds us what approach to meals. Start with imagination. It was her way of normal used to be like. We need dessert. Have breakfast for lunch. looking after herself and freeing to remember. Eat leftover pizza for breakfast. herself to be very successful in Lighten the load with whimsy and her chosen career. We are already skilled at not being chocolate. able to eat out at restaurants. We Finally, if you have your health are familiar with this lack of conve- Or, comfort yourself with your fa- and your friends and family are nience but it can still be drudgery vourite foods over and over, even fine, be thankful, be grateful. If always being responsible for food if others think the repetition is not, then you know personally that on the table. If you have space, try funny. I used to work with some- sometimes it’s the little things that batch cooking larger quantities of one, not the same dessert-first make a difference in a day. Not favourite recipes that freeze well person of course, who had a everyone is doing well. If you can, and give yourself the convenience peanut sandwich every day donate to worthy causes that help of a ready meal from the freezer. for breakfast and for lunch. Every others or volunteer your time and Don’t label the container and get single day! This satisfied her and expertise in the community. You a surprise as well! she didn’t care what others might are needed. u

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44 | Canadian CELIAC Dedicated to Way of Life! Canadian CELIAC | 41