Coeliac Link Autumn 2020

O F F I CI A L M AGAZINE OF COELIAC NEW ZEAL AN D

| Gluten-free living

$ 9. 5 0

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AUTUMN 2020

TREATING CHILDREN WITH RAISED COELIAC ANTIBODIES

CELEBRATING OUR HEROES AND THE RESILIENCE OF OUR COELIAC COMMUNITY RAISING COELIAC AWARENESS WITH NANOGIRL LABS

BACK TO SCHOOL

LUNCH BOX

COMPETITION

CAW

Coeliac Awareness Week June 14-20

Reading food labels * Dining Out Programme * New gluten-free products

FO LLO W YOUR GUT FE E LI N G

TA K E O U R SELF-ASSESSMENT TEST ONLINE

Persistent fatigue? Irritable bowel? Unexplained fertility issues?

Osteoporosis? Hair loss? Could it be coeliac disease?

COELIAC AWARENESS WEEK JUNE 14-20 2020

CAW SUPPORTERS.

CNZ FUNDING PARTNERS.

coeliac.org.nz

Community Organisation Grants Scheme, Pub Charity, The Southern Trust, Lotteries Grant Board, The Lion Foundation

Supporting gluten free for life every day.

AU TU MN

O UR

V I S I O N | People with coeliac disease live healthy lives every day.

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Summer issue deadlines Booking 12 October Material deadline 16 October Magazine in mailbox 16 November

L IR G O N A N

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Medical Advisory Panel Dr Simon Chin, Paediatric Gastroenterologist, Starship; Professor Andrew Day MB CHB MD FRACP AGAF; Dr Kamran Rostami, MP Phd Consultant Physician and Gastroenterologist; Dr Kristin Kenrick Senior Lecturer University of Otago; Dr Clare Wall Associate Professor University of Otago Faculty of Medical and Health Sciences; and New Zealand Registered Dietitian’s Anna Richards, Sylvia North, Julie Leeper and Margaret Thorsen.

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Contact Coeliac New Zealand, PO Box 9734 Newmarket, Auckland 1149 Email admin@coeliac.org.nz Website coeliac.org.nz Board Dawn Folkard, Brett Thorburn, Corinne Cameron, Kirsty Vercoe, Robyn Moore and Rosie Jerram.

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F EATU R E S

A life change for the better .......... 12

Hayley Drysberg coeliac story.

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The power of reading food labels ................................... 14

Gluten-free shopping on a budget.

Your favourite tipple.................... 16

A guide to gluten-free alcohol.

Nanogirl Labs............................... 18

Making STEM fun and accessible!

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Coeliac New Zealand Incorporated is a registered charity.

Our Charities Commission Registration Number is CC27810.

Disclaimer: All reasonable attempts are made to ensure the accuracy of the content of this magazine. The contents are not independently checked for medical accuracy and are not necessarily endorsed by Coeliac New Zealand. We welcome submissions; however, please note that articles may be edited.

GF bites and delights ...................... 30 GF meal inspiration ........................ 34 Recipes ............................................ 36

REGI O N AL

DI R ECTO RY

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E IV T A E R

A note from the General Manager ���4 A note from the Editor .......................5 Thumbs up ........................................6 Dining Out Programme update .........8 From the regions ............................. 10 News .............................................. 11

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REG U LAR S

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Coeliac Link is the official magazine of Coeliac New Zealand.

F O O D

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Art Director Sue Pepper marketing@coeliac.org.nz

Your gut and inflammation.

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Fire in my belly ............................ 20

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Advertising enquiries Dana Alexander +64 9 414 7467 dana@coeliac.org.nz

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Regulars / C N Z B O A R D

MESSAGE from the GENERAL MANAGER HERACLITUS

the Greek philosopher said, “Change is the only constant in life.” Last year we changed our structure, launched our new website, and updated our policies to meet compliance requirements.

The year ahead will also include changes to the way we work with more emphasis on supporting our volunteer base and enhancing our educational resources.

Our volunteer base around the country enables us to connect with our members in our communities. You will read later in the magazine about some of the great activities our team of volunteers have been involved in recently and we have opportunities all around the country for coordinators. If you are keen to get involved, learn new skills and connect with people then please get in touch by emailing admin@coeliac.org.nz to find out more about joining our team of volunteers!

Living with coeliac disease (CD) or gluten intolerance can be hard – which is why our work to raise awareness, support research, education, and initiatives for those working in the health sector is essential.

The COVID-19 state of emergency has seen us change the way we work and live. It has been an amazing effort by workers in our health industry, food industry and other essential services but equally it has been an act of social solidarity by everyone living in their bubbles.

We continue to work remotely from home to support you via our website, emails and social media and encourage you to stay in touch.

OU R VOLUNTEER BASE AROUND THE COUNTRY ENABLES US TO CONNECT W ITH MEMBERS IN OUR COMMUNITIES

MEET THE

TEAM

B O A R D (Clockwise from top) Dawn Folkard (Chair), Corinne Cameron, Robyn Moore, Kirsty Vercoe, Rosie Jerram, and Brett Thorburn (Vice-chair).

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Hopefully by June gatherings will be able to take place again but if not we will offer online access to our AGM and Coeliac Awareness Week activities that Dana Alexander our Sales and Marketing Manager is organising with the help of our sponsors and coordinators.

WENDY BREMNER General Manager

FIND OUT MORE Facebook.com/Coeliac.New.Zealand

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DA N A’ S

ME S SAGE

/ Regulars

Staying connected It was heart-warming to see how RESILIENT our coeliac community was over the LOCKDOWN.

T IS FAIR

to say that we are forever changed by the threat posed by the COVID-19 pandemic and resulting steps that governments around the world took to try and eliminate the spread of the disease. It also demonstrated the importance that we as a nation place on health and caring for our fellow Kiwis – and why health promotion to ‘save lives’ is so important.

Whilst Coeliac New Zealand’s work towards reducing the impact of coeliac disease on individuals and families’ lives is much less dramatic, it does provide some learnings about the importance of education in raising awareness. It also shows why informing the public about how to recognise, diagnose, and treat health issues early is so important.

The experience of living through a national shutdown also provided Kiwis with the opportunity to spend valuable time in their bubble whether that was with flatmates, parents, siblings, children, or a partner. It was heart-warming to see how resilient our coeliac community was over the shutdown and to hear about the creative ways that many of you maintained social connection and

stayed physically and mentally fit.

We thank you all for supporting CNZ as we too adjusted to working remotely from home. I encourage you to continue to stay connected online and via our social channels, and to help us celebrate Coeliac Awareness Week during June 14-20.

I hope that you enjoy this issue of Coeliac Link which covers the full breadth of CNZ’s efforts – from educating healthcare professionals and the food and hospitality industry, to raising awareness and promoting early diagnosis, to providing support and understanding for those living with the disease. ____

Ng mihi.

Dana

DANA ALEXANDER Editor, Coeliac Link

coeliac.org.nz | 5

S P R EAD TH E W O R D AB O UT O U R SELF-ASSESSMENT TOOL We’re delighted about the reaction to our online self-assessment tool, launched in 2018 – around 4,500 people have already used the interactive tool to see if they are at risk of having coeliac disease.

We encourage you to share the Online Self-Assessment card (pictured above) to raise awareness among your friends, wider family and members of your community.

By doing this, you’ll be supporting our vision of helping ensure people with coeliac disease are diagnosed quickly, live healthy lives and have a prospect of a cure – especially since there are more than 55,000 Kiwis who are not yet diagnosed.

Handing out the cards is a way of giving people confidence to open a discussion about coeliac disease with their own GPs. It may also help others understand a little better what it’s like to have coeliac disease for you.

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If you would like cards to hand out, please contact admin@coeliac.org.nz and we’ll send them out to you.

News / F R O M T H E O F F I C E

S TA N D O U T G F R ECO M M E N DAT I O N S !

Maria Foy from 'Happy mummy happy child' shares her top 'stand out' gluten-free places to shop online. Whether you’re looking for GF raw ingredients or readymade meals do remember to take the ordinary precautions to check the gluten-free food choices are right for you!

Handmade in New Zealand Keto eats deliver nationwide.

Use the glutenfree filter to check out the selection of keto based desserts, gluten free bread mix and more. ketoeats.co.nz

Hammer and tongs

Do you have anyone you want to give a T H U M B S U P to? ____

Please email Fred at: admin@coeliac.org.nz

Providore market brings you a bespoke 'made or based in New Zealand' range of gluten-free goods, with options for those seeking nutfree, dairy-free, soy-free, egg-free, vegan, or vegetarian products.

Allergy friendly and sustainable products are also available as gift boxes for those special occasions in life. providoremarket.co.nz Think foody provide a wide range of imported and locally sourced gluten-free and keto products. thinkfoody.co.nz If you don't have time to cook, but you want to nourish you and your family,

Hammer and tongs take their grandmother's low and slow cooking techniques to create gluten free convenience dishes that are healthier and made from quality ingredients. Vegan and vegetarian options. hammertongs.co.nz

Gluten free me is a haven for coeliacs! Visit in store or shop online to find an array of glutenfree food, from breads to pies, flours and sauces and cereals – colour coded to help identification. onestopglutenfreeshop.co.nz A family-based business established to provide coeliac-safe baking products, the Gluten-free store specialises in providing raw ingredients for bulk purchase. Visit their website to shop online. glutenfreestore.co.nz

Thanks and welcome!

Thank you to all our volunteers who have supported Coeliac New Zealand in the past as coordinators, answering our helpline and at events. Thank you to those of you who have decided to continue to volunteer and those who are new to their roles as volunteer coordinators. We really value the time, energy and commitment shown by all of you.

You will see a list of coordinators currently available around the country on page 3637. New email addresses have been set up to enable members to stay connected locally and get the support they need. Our coordinators may make direct email contact with you to stay in touch via email. Please email Fred on admin@coeliac.org.nz if you would like more information.

In these unprecedented times staying connected via email and Facebook is important.

Please note the Coeliac New Zealand helpline number is no longer operational, as many of the questions can be found via our website 24/7 at coeliac.org.nz, or you can call the office and leave a message – which we clear regularly. ____

CHANGED YO U R C O N TA C T D E TA I L S ?

••• Please E M A I L Fred at: admin@coeliac.org.nz or phone 09 414 7467.

If you require medical assistance, call your GP or contact the New Zealand Healthline on 0800 611 116.

A national helpline 1737 is also available via text or phone 24/7 if you’re feeling isolated, anxious or overwhelmed; and for information about COVID-19 call 0800 358 5453.

A BIG THANKS to our funders – COGS, Lottery Grants Board, Pub Charity, The Lion Foundation, and The Southern Trust – without whose support we would not be able to deliver educational tools to increase diagnosis, or develop resources to support the everyday existence of people living with coeliac disease.

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CO E LIAC

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AWARE NE S S

/ News

COELIAC

awareness

EEK

Get involved – June 14-20 2020.

OELIAC

Awareness Week runs from June 14-20 and this year’s theme is ‘Follow your gut feeling’.

The aim of Coeliac Awareness Week is to raise awareness of coeliac disease as a life-long condition with a range of symptoms, that can only be treated by being 100% gluten free.

This is all about supporting Kiwis with coeliac disease and educating people about the need for early diagnosis, good management and support from our friends, families and communities.

We all know coeliac disease has many ‘faces’ – it can affect anyone from any walk of life and has a wide range of symptoms that aren’t always

easy to see or explain. Throughout Coeliac Awareness Week, we’ll be sharing stories about our coeliac heroes who are living well with coeliac disease and inspiring others to do the same. We’ll also encourage those who might have the condition or is at risk to follow their gut feeling, get tested and diagnosed so they can live well too.

We’ll also be celebrating our gluten-free food heroes by championing gluten-free food products, recipes and food service outlets throughout the week, including those who are using the Crossed Grain Logo and taking part in the Dining Out Programme. We’ll also be giving away some of our favourite food products so keep an eye out for ways to win. CL

We encourage all our members to get involved – whether that is by hosting a Gluten-Free High Tea, distributing posters in your neighbourhood or getting involved in the ‘COOK and SHARE’ your GF Lunch Box activities – keep an eye out for ways you can be a part of Coeliac Awareness Week on the CNZ Facebook page.

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COOK AND SHARE A GLUTEN-FREE RECIPE TO WIN To enter the competition • Follow the Coeliac New Zealand Facebook page • Like and share all Coeliac Awareness Week posts • Share a favourite recipe (including a photograph) on the CNZ Facebook page • Tag – or tell us the names – of two friends who would love to share a gluten-free Countdown gift box with you!

W I N one of 10 gift packs value $25.

coeliac.org.nz | 7

News / D I N I N G O U T P R O G R A M M E

SUPPORT FOR DOP NO ONE

wants to feel like a burden, but for many coeliacs, dining out causes anxiety and uncertainty and makes them feel that way. A survey undertaken with the assistance of Tayla Eveleigh, an intern from Auckland University BHSc, confirmed that trust lies at the center of both a positive and negative dining out experience.

Results also confirmed that the Dining Out Programme (DOP) accreditation plays a large part in how Coeliac New Zealand members feel about whether a location is safe to eat out at.

MOBILE HOSPITALITY TAKES THE LEAD ON ACCREDITATION Coeliac Link talks to two MOBILE FOOD VENDORS who are leading the way providing coeliac-safe dining options for EATING on the GO. OURMET

90% of respondents said that being coeliac was/has been a barrier to eating out: • Because they couldn't always partake in social events • There are limited gluten free meal choices • They are constantly needing to research and ask questions to waiters and chefs • Often, they must eat food they do not really enjoy.

Eating out was primarily for building social relationships, for a treat or a break from cooking: • 62% said they would eat out more if there were more reliable gluten-free places to dine • Eating out also elicited anxiety and uncertainty: • Was the food really GF? • Will they react to what they have eaten – immediately, or when they get home?

However, some respondents said eating out was no longer a barrier, and they recognised improvements the hospitality sector has made to upskill staff in safe food handling practices and provide more GF options.

8 | Autumn 2020 Coeliac Link

food truck dining at markets and events, and the rise of metro-eateries popping up in vibrant inner-city shopping precincts are changing the way New Zealander’s eat out.

The love of trucking – Noodlechick!

No tall poppy syndrome here – the Noodlechick food truck in Auckland was inspired and motivated by meeting talented producers at local markets and for the owner – a lifetime of managing irritable bowel syndrome.

After working in the industry as a cafe chef for over 10 years Alana Hiddink was driven to create something that reflected her ethos for simple, bold and delicious food.

Inspired by the Kwasian way of life Alana developed a menu that is not only dairy free, gluten free with no refined sugar or added preservatives it’s also free range and organic where possible. She says, “Our fresh noodles are labour intensive but worth it!” Dishes include beetroot, seven greens, ginger and hemp and carrot noodles and are all gluten free,

plant powered, and healthy.

Alana was keen to offer a truly gluten free menu so connected with CNZ, where Dana Alexander guided them through the journey of being accredited with the Dining Out Programme – providing members with 100 percent confidence of a coeliacsafe food truck experience. ____

Follow their whereabouts on Instagram Noodlechick_ and to swap health and wellbeing stories. CNZ members will receive a $2 discount off their first Noodlechick order.

Located in the carpark at Village Wines, 118 Hobsonville Road.

Opening Friday May 22, 12-6pm.

THEY WON’T MAKE A FUSS, AND WILL MAKE EVERY MEAL JUST AS YOU LIKE IT!

Herba Gourmet – just as you like it!

In 2016 Herba Gourmet started a food trailer at the ReSTART Mall in central Christchurch – which they still bring out for catering at weddings and events. Inspired to provide a balanced food experience to cater for the needs of office workers training for a marathon or busy parents seeking an easy meal for the family, without a crazy price point and everyone in between – Herba Gourmet walks the tight rope (with confidence) of serving just the right amount of nutrition, convenience, and pure eating pleasure! All their meals are available gluten (and dairy) free and for people with coeliac disease, lactose intolerance, are vegan, or just don’t like tomato they’re proud to deliver on the mantra that “they won’t make a fuss, and will make every meal just as you like it!” Herb crumbed fresh fish of the day with homemade tartare sauce is there top selling dish, paired with our beetroot and feta power salad and hand cut chips with rosemary sea salt, topped with fresh sliced avocado. YUM! ____

Open seven days at the Riverside Market, 96 Oxford Terrace, Christchurch Central City | herba.co.nz

E AT O U T S A F E LY WANT TO KNOW MORE? ••• EMAIL admin@coeliac.org.nz TEL +64 9 414 7467 WEB coeliac.org.nz/ dining-out-programme

DUE TO

Open for contactless pick and delivery and contact traced walk up orders.

the closure of cafes and restaurants and Ministry of Health guidelines to prevent the spread of COVID-19 coronavirus some businesses accredited with the Dining Out Programme have not been able to schedule an independent site audit. ____

See the Coeliac New Zealand website for more details.

Join the DINING OUT PROGRAMME

so diners will know they can trust your food to be truly gluten free Register today! coeliac.org.nz

Helping Kiwis with coeliac disease and gluten sensitivity eat gluten free, confidently.

TEL 09 414 7467 EMAIL dop@coeliac.org.nz

News / F R O M T H E R E G I O N S

E WERE

fortunate to hold several member events around the country, prior to the Covid-19 Alert Level 4 announcement that restricted public gatherings. Thanks to the generous donation by Healtheries, members were able to sample their new range of gluten-free cereals and try recipes prepared by our Food Ambassadors Alana Scott and Vanessa Baxter. ____

Get-togethers were held around the country so members could share their knowledge and provide support for one another.

With enthusiasm from our Auckland District coordinators Ben Grant and Vincent Colombie a team was forged to run Round the Bays – and looked splendid in their new CNZ t-shirts!

With lots of pre-training and support, the team enjoyed the iconic race before joining other members at the AfterGlow party.

Marina Grantham-Campbell organised a fun filled get together for members living in the Waikato region at the beautiful Profs Café and woodland gardens. The members were delighted to be able to take home plenty of Healtheries cereal packs to give away to friends and family.

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Local members from Christchurch enjoyed a wonderful day out in the Botanic Gardens, Hagley Park.

Everyone was extremely thankful to take home samples of the Healtheries cereal and Yoodle Noodles. They also sampled the delicious slice recipes made by Pip Mead and member Katie Martin – well-liked by everyone!

The Auckland Kids Club had a successful AfterGlow party held at the home of Juliane Winter-Noakes where families joined for a casual meet-andgreet in the beautiful sunshine. They enjoyed great products provided by Healtheries, Good Buzz Kombucha and Yoodles plus delicious sausages from GreenPastures Butchers.

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Our new District Coordinator, Lisa Russell was motivated to set up a coeliac Kids Club in Dunedin after she found that her family was the only one at school where (two) children were diagnosed with coeliac disease.

Having an informal way for parents to support each other and share ideas is hugely beneficial – and the children also have fun without the need to worry about the food! ____

Eleven families attended our recent Wellington Kids Club event and participated in cooking activities making a gluten free muesli slice and a cereal yoghurt parfait. Parents appreciated the opportunity to meet others on a similar journey while the children enjoyed a shared afternoon tea and a play with their new coeliac friends! ____

If you are motivated to become a volunteer or set up a CNZ Kids Club in your region, please get in touch with Fred at admin@coeliac.org.nz

SHARING IS CARING D O YO U K N O W

someone who isn’t a coeliac but who would be interested in becoming a CNZ Member? You don’t have to be a diagnosed coeliac to join our community, attend events and

enjoy member benefits! ____

If you have any family or friends who would be interested, we’d love the opportunity to introduce ourselves.

VO LU NTE E RING

/ News

H E A LT H P R O M O T I O N E S U LT S F R O M

a survey late last year indicated there was a need to provide greater education to our members, their whanau, colleagues, and the hospitality industry.

To achieve this, a dedicated professional health promotion role will be appointed to create positive and sustainable change for people with coeliac disease, their families and whanau, schools, workplaces, and the community at large.

As a charitable organisation we run a tight ship keeping expenses at a minimum, however, to do more of the work that is needed, we need to grow. It is our intention to increase

our team of paid staff from three part time staff to four to support our 30+ volunteers. Towards this end we are developing a detailed 5-year Health Promotion Implementation Plan which we will be able to share details of, later in the year. ____

If you would like to support this initiative please make a donation to Coeliac New Zealand via the store dropdown menu on our website, or contact Wendy Bremner by emailing manager@coeliac.org.nz for more information.

CONNECTING OUR VOLUNTEER NETWORK WHEN IT COMES

to volunteering, passion and positivity are the only requirements – get involved today!

Our three-year strategic plan identified the need to develop clear roles and responsibilities for our volunteers to enable them to deliver local support to our members.

As a result, we divided the country into 15 regions overseeing 39 districts.

It is our intention to appoint a District Coordinator (DC) for each of these districts who will be responsible for direct contact with members in their area. We will also appoint 15 Regional Coordinators (RC) who will liaise between the head office and the DCs in their region, as well as assisting us in assigning new DCs when required. We also intend to have at least one Kids Club coordinator for each region and in

some cases, RCs will be DCs too.

We are grateful for the time and dedication that our existing volunteer network has provided our organisation to support our members, raise awareness and run events and activities – but now it’s time that we extend our support to cover more neighbourhoods across the country.

Volunteering is a great way to make new friends that share common interests, expand your network, and boost your social skills – by having a good dose of fun along the way! ____

If you are interested in being one of our volunteer coordinators please get in touch via email admin@coeliac.org.nz or call the office between 9:30-3pm Monday to Friday and we can provide you with more information.

coeliac.org.nz | 11

Feature / M Y C O E L I A C S T O R Y

A LIFE CHANGE

FOR THE BETTER

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PHOTOGRAPHY: LM PHOTOZ

Hayley Dyhrberg’s COELIAC STORY.

OR MOST

of her life, Hayley Dyhrberg had struggled with feeling lethargic and under the weather. Alongside skin and joint issues that no doctor could provide an answer to, she thought that was just how her body was and gradually learnt to live with never feeling her best. All that changed when she finally got the diagnosis that turned her life around – coeliac disease. Hayley’s come a long way in the two years since her diagnosis.

She’s gone from feeling rundown, unmotivated and uninspired to the happiest she’s ever been – as well as one of the country’s most successful bodybuilders and one of Coeliac New Zealand’s fantastic ambassadors.

But it certainly wasn’t easy.

Suffering in silence Coeliac disease was never unknown to Hayley. When her brother was diagnosed with the condition years ago, she found out that she might need to be tested – but her doctor was convinced she had nothing to worry about.

“My doctor was really of the opinion that coeliac was a condition that affected the intestinal tract,” Hayley recalls. “And the symptoms I have never fit into the ‘standard box’, so I was told there was no value in getting me tested”.

Hayley’s behavioural symptoms of brain fog and depression were swept under the rug. While she went through bouts of gastrointestinal issues – and was admitted to hospital countless times overnight with severe stomach pain – doctors could never figure out what was wrong. Hayley even underwent an operation in the hopes of finding the cause of the problem, but still came away with no answers.

It wasn’t until I signed up to the gym that I was told how I could totally transform the way I was living.

“On my file, they basically wrote that it appeared as though all the issues I was experiencing were psychological,” says Hayley. “That experience put me off ever visiting the doctor again and I began to simply suffer in silence.

I started to believe that everything I was experiencing was all in my head.”

Finally, a diagnosis After Hayley’s niece was diagnosed with coeliac disease, Hayley decided enough was enough. She changed GPs to a new doctor who listened to all of her symptoms, and finally had a blood test that come back positive – that was in December 2017.

“I was right! Everything I had been experiencing was not in my head after all,” says Hayley. “That moment started me on my road to recovery.”

There’s no denying that adjusting to life as a coeliac is tough, and Hayley really struggled for the first few months. Finding it daunting to understand the gluten-free diet and intimidating to eat out at restaurants, she was mainly living off processed gluten-free foods. All in all, life as a coeliac just seemed way too hard.

“I felt sorry for myself and found all my comfort in unhealthy food, alcohol and cigarettes,” she says. “It wasn’t until I signed up to the gym that I was told how I could totally transform the way I was living.”

Finding a new direction It was at the gym that someone mentioned to Hayley how easy bodybuilding and the diet that comes with it would be for her as a coeliac.

I F E LT S O R R Y F O R M Y S E L F A N D F O U N D A L L M Y C O M F O R T I N U N H E A LT H Y FO O D, ALC O H O L A N D C I G AR ET TE S

Getting into bodybuilding, as well as finding a nutritionist to make the shift to a whole foods diet easier, transformed her lifestyle completely.

At the start of 2019, she decided to compete in her first bodybuilding show.

Hayley had made a goal to get herself on the stage and by the end of her first year, she’d won the overall national title for women’s sports model and best female performance at the New Zealand National Championships.

“Bodybuilding isn’t a cheap hobby and being coeliac can make it a bit more complicated,” says Hayley.

“But the sport has turned my life around entirely and I have fallen completely in love with it.”

This year has unfortunately been a little more up in the air, with both national and international shows cancelled or likely to be postponed due to COVID-19. The goal was Universe Championships 2020, but she’s still training hard for the next Universe or World Championships – whenever they may be!

Healthier and happier It is strange for Hayley to think her life might have been different if she had not got her coeliac diagnosis.

Three years ago, she was feeling unheard by her doctors, dispirited, and drained. Today, she’s feeling inspired, motivated and most importantly, proud of herself. She’s even become one of our awesome Coeliac New Zealand ambassadors; spreading awareness of the disease and encouraging others to get diagnosed.

For Hayley, a coeliac diagnosis was a blessing – without it, she’d never have found her newfound energy, her lust for life, and passion for bodybuilding. A life without gluten has made way for a whole lot more happiness! CL

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Feature / F E A T U R E

THE POWER OF

READING FOOD LABELS FOOD LABELS can be a bit overwhelming – there’s plenty of FINE PRINT, unfamiliar WORDS, and CONFUSING NUMBERS.

14 | Autumn 2020 Coeliac Link

Our gluten standards are a bit stricter than other international standards EARNING

to read food labels effectively is a game changer for many coeliacs.

Not only can reading them properly widen the range of gluten-free food you have in your diet, it can also save you money by not being restricted to exclusively gluten-free labelled products (which can often be more expensive!).

With the support from our Medical Advisory Panel we’ve gathered some helpful advice to empower you to select a broad – and the most affordable – range of foods to maintain a strict gluten-free diet.

Whether you are new to the diet and reading food labels or need a refresh, we encourage you to check out the new webinar series in the members only area of the website.

How does a product get a gluten-free label?

For a product to be labelled glutenfree in New Zealand, it must adhere to the Food Standards Australia New Zealand (FSANZ) standards. This means it can’t include oats or cereals containing malt from a gluten grain, and it has less than 3ppm (basically meaning no detectable gluten).

Our gluten standards are a bit stricter than other international standards. Codex (the system established by the World Health Organisation and the Food and Agriculture Organisation) has a threshold of 20ppm, meaning food products overseas can contain more gluten than our food does but still be considered gluten-free.

Where to look on the label In New Zealand all packaged food is legally required to include a printed

label that confirms all ingredients and allergen information. For coeliacs, you need to watch out for the inclusion of wheat, rye, barley, oats, and spelt on the Nutrition Information Panel.

It can be confusing though when products have their allergens listed as a separate label. You might find the information you need in the ingredients list (in brackets or in bold print), or it may be an entirely different statement below. It’s best to give the whole label a good scan to ensure you haven’t missed anything.

You might see some labels saying ‘produced in a factory with gluten’ or ‘produced on equipment that also manufactures gluten containing products’. In these cases, there’s normally a low risk of contamination and it’s up to you whether you eat them. On the other hand, labels saying ‘may contain traces of gluten’ or ‘may contain wheat’ should definitely be avoided.

Hidden gluten Food additives are added to foods to preserve their quality and flavour. They are normally identified on a label with a class name (e.g. thickener) and either an additive name (e.g. guar gum), or a number (412). Most food additives

don’t contain gluten – but raising agents and some thickeners might.

Raising agents are a combination of three ingredients. If wheat scratch is used as one of the ingredients instead of cornstarch, then the raising agent is not gluten free.

Thickeners can be made from wheat, maize, tapioca or potato starch.

If wheat is used, then the product isn’t safe to eat – but it must be declared on the label.

There are some additives that are so processed that although they might have started off as wheat, there’s no gluten present in the final product. These additives are: • Caramel colour – 150 • Dextrose • Glucose syrup • Maltodextrin.

Even if you’re gluten free, these are considered safe to eat. This is why you might sometimes see a product with a gluten-free label but contains an ingredient that started off being wheat based.

Finding gluten-free products can be tough, but it’s made easier by the guidelines we have in New Zealand.

When looking at labels and searching for coeliac-safe products, remember that it’s always best to ask for advice if you’re ever in doubt. Seek advice from your GP or other health professional, or contact Coeliac New Zealand with any queries via our website. CL

THE CROSSED GRAIN LOGO THE CROSSED GRAIN

logo is a handy way to quickly identify if a product is gluten-free. It’s a worldwide standard in which foods are lab tested to ensure they adhere to the Codex gluten standard of less than 20ppm – but it can be a bit confusing for New Zealanders.

As we mentioned earlier, the standard for a product to be considered gluten-free down under is much stricter than in other

parts of the world. Because of this, a product that is labelled with the words ‘Gluten Free’ in a New Zealand supermarket and has the Crossed Grain logo (CGL) signifies that the gluten levels are less than 3ppm.

Some imported products that display the CGL without the word’s gluten-free written on the label, meet the Codex standard but not necessarily the FSANZ standard of nil detected.

coeliac.org.nz | 15

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YOUR

favourite

P L I P E

A GUIDE to gluten-free ALCOHOL

N A LAND

of vineyards, summer barbecues, and cricket games spent with a beer in hand, it can be difficult for people following a strict gluten free diet to know what they can and can’t drink.

All types of wine are safe for those with coeliac disease.

True ciders (those made of 100% apple) are also safe for coeliacs if they include no additives, although if they contain malt as a sweetener

16 | Autumn 2020 Coeliac Link

As it’s made with barley or wheat malt, standard beer isn’t safe for coeliacs. then they may not be. When it comes to spirits, the distillation process means that no gluten can survive in vodka, tequila and rum – but it’s good practice to always check the label to be sure.

Unfortunately, beer is an unluckier story. As it’s made with barley or wheat malt, standard beer isn’t safe for coeliacs. But there are some Kiwis with their thinking caps on and creating exciting options.

Who’s making it?

Phil Scott is a passionate lover of beer and was disappointed when he couldn’t drink any of his favourites after his coeliac diagnosis – so he set about creating his own. Scotts Brewing has now become a 2500-litre brewery in Oamaru, where Phil makes two glutenfree pale and amber ales.

Kereru Brewing also has a selection for coeliacs, with a gluten-free ale currently available and a new glutenfree APA set to arrive in stores within the next few months.

There are also many Kiwis brewing at home. John Thompson was a qualified beer judge before being diagnosed as coeliac, and since then has perfected the gluten-free home brew. His blog at Birdleg Brew shares his brewing experience and is a fantastic read for anyone interested in creating their own brew.

What’s in gluten free beer?

To make gluten-free beer, brewers use an alternative to the common beer

cereals – typically sorghum, buckwheat, or corn – and use separate brewing machinery to minimise any chance of cross contamination. To be verified as gluten-free, the beer must pass tests ensuring it doesn’t exceed 3ppm.

As some breweries try to recreate Kereru and Scotts Brewing’s ales, there are advertisements for ‘glutenreduced’ or ‘low-gluten’ beer emerging.

This means that a beer has been brewed using gluten-containing ingredients, and then had an enzyme added to break down gluten proteins.

With this method, the gluten can never be fully removed so won’t be safe for people with coeliac disease.

Labelling ‘gluten-free’ alcohol In recent years, there have been efforts to remove health claims from alcohol. For some time, it looked as though that would include information about whether alcohol was gluten free or not, which could have made it difficult for coeliac consumers to know what they could drink. Luckily, that standard was amended to ensure that gluten nutrition content claims could continue to be made about food containing more than 1.15% alcohol by volume.

This means that alcohol producers must declare information about any allergens (including gluten containing cereals) on the packaging and can inform coeliac and gluten intolerant customers if the product is safe for them to consume. CL

E N J OY A G F T I P P L E R E S P O N S I B LY W H AT E V E R

gluten-free drinks there are to enjoy, they must always be enjoyed responsibly. The amount of alcohol you drink and how you drink can increase your risk of serious health, personal and social problems,

and affect those around you. Drinking alcohol is never absolutely safe, and risk of any harm to health can be lowered by adhering to alcohol guidelines (you can find New Zealand’s guidelines at health.govt.nz).

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Delicious & Gluten Free AVAILABLE IN STORE AND DELIVERING NOW

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keacookies

For many of us, when we THINK of SCIENTISTS we think of GREY HAIRED MEN in a laboratory, bunsen burners and FLASKS of BUBBLING CHEMICALS.

18 | Autumn 2020 Coeliac Link

PHOTOGRAPHY: NANOGIRL LABS AND RYAN POLEI

PHOTOGRAPHY: NANOGIRL LABS

Feature / F E A T U R E

OCIAL

enterprise Nanogirl Labs, co-founded by Dr Michelle Dickinson, is on a mission to overcome those stereotypes by making STEM (science, technology, engineering and math) fun and accessible for everyone. Following t he launch of ‘Nanogirl’s Lab’ online STEM programme in March, children in New Zealand and around the world are being inspired with engaging hands-on science adventures in their own.

From baking a cake, to washing your hands to stop the spread of coronavirus – science is all around us in our everyday lives, even if we don’t realise it. It informs the decisions we make for ourselves and our families, from what we choose to eat, to whether to vaccinate our children.

Dr Michelle Dickinson strongly believes that science should be open, transparent and a topic of conversation over the dinner table, not just the

lab bench, and her vision is to create positive role models in the world that our children can aspire to be like.

Research has shown that children decide if science is for them by the time they are 12 years old, so giving young children the opportunity to explore science before then can have a huge impact on their future aspirations and engagement in STEM. That’s the driving force behind the creation of Nanogirl – a character that began as Michelle’s science superhero alter-ego, and has evolved rapidly into a successful STEM education brand both in New Zealand and overseas.

Nanogirl Labs now has a team of science educators (including Dr Kate Sparks) who regularly perform as ‘Nanogirl’, entertaining and inspiring audiences in schools and at events around New Zealand with the brand’s signature explosive style. A familiar sight on both stage and screen, Nanogirl uses her love of STEM to engineer her way in and out of all sorts of adventures, and communicates scientific principles and concepts in a way that is easy for children to engage with and enjoy.

With schools closing around the world and children being stuck at home, it seized the opportunity to engage children with science in their own home by creating an online STEM programme of over 50 science adventures, along with cheat sheets for parents who might be feeling a little anxious at suddenly needing to play the role of teacher. Beyond COVID-19, Nanogirl's Lab continues to bring purposeful play

FOLLOW YOUR C H I L D’S N ATU R AL CURIOSITY AND GIVE THEM THE SPACE TO LEARN BY EXPERIMENTING

and STEM learning into thousands of homes and has become a core part of the Nanogirl experience.

Empowering families to explore science together at home has long been a focus for Dr Dickinson, whose book The Kitchen Science Cookbook has been a bestseller since its launch in New Zealand back in March 2018. The book has now been distributed to over 30 countries and has been brought into many schools as an additional resource to help build confidence in science amongst both students and teachers.

For parents who want to help their children to develop a love of STEM, the advice from Nanogirl Labs is simple: follow your child’s natural curiosity and give them the space to learn by experimenting. Even if you weren’t confident in science at school, resources like Nanogirl’s Lab and the Kitchen Science Cookbook make it easy to experiment together at home, and those shared experiences are the best way to learn. CL ____

Watch this space! – Coeliac New Zealand are collaborating with Nanogirl to develop gluten-free cooking experiments for our regional Kids Club’s to engage with during Coeliac Awareness Week.

D R K A T E S P A R K S is a Nanogirl Labs

scientist and educator with a background in marine biology and an interest in anything that crawls, swims, or burrows along the seafloor. After growing up in London with the ocean a far-off mystery, Kate moved to New Zealand and fell in love with our beautiful blue backyard. Kate develops much of the content for Nanogirl Labs and helps bring science to life through performing as 'Nanogirl' in schools across the country.

From baking a cake, to washing your hands to stop the spread of coronavirus – science is all around us. coeliac.org.nz | 19

Feature / N U T R I T I O N

FIRE IN MY

B EL LY Your gut and INFLAMMATION.

LT H O U G H

everyone experiences inflammation at times, problems with too much inflammation is an ongoing challenge for people living with an autoimmune disease. Inflammation is something that our body normally does when there is an injury, infection, or some other perceived “problem” in the body that needs to be fixed. It is usually associated with heat, redness, pain, and swelling, and is orchestrated by our immune system which plays a primary role in healing and regeneration.

Inflammation is neither good nor bad; if we experience an injury or come down with the flu, we want our immune system to respond with

20 | Autumn 2020 Coeliac Link

inflammation to heal. Usually the symptoms of an inflammatory reaction are not pleasant, but we would not be able to heal without it.

However, inflammation is not so good when it becomes chronic.

[Nearly] all long-term health problems are linked to too much inflammation happening on a low-grade chronic level. Too much inflammation causes an overwhelm of painful symptoms that can show up in many areas of the body.

Coeliac disease (CD) is an inflammatory condition. That’s why it’s not surprising to see other inflammatory health problems such

as bone loss, fertility issues, arthritis, muscle weakness, and skin conditions when CD is not well managed.

When someone with CD is exposed to gluten, an inflammatory response develops in the gut, leading to an array of symptoms that our readers are familiar with.

Most people with CD find they are unaffected if they follow a strict gluten free diet. However, there are a proportion of people who experience ongoing inflammatory symptoms, even when gluten exposure is kept at bay.

When there’s ongoing inflammation we need to look closer at

other issues happening in the gut. Gut inflammation can be linked to problems with gut bacteria (or microbiome), other problematic foods in the diet, problems with the gut lining barrier, and other environmental or lifestyle issues.

If you are a highly sensitive person experiencing ongoing aches and pains, we’re going to explore some potential causes of inflammation.

Microbiome and inflammation Under normal healthy conditions, there are several populations of friendly “good” bacteria in our gut.

These bacteria are known as the microbiome. One of their roles is to prevent invasions from the not-sofriendly “bad” bacteria and to regulate the way our immune systems interacts with pathogens as well as things coming through our diet. When there are imbalances to the gut microbiome, we can experience changes in our immune system which can lead to increased inflammation.

Imbalances in the microbiome have been linked to triggering inflammation in several ways. An overload of “bad” bacteria can alter structure and integrity on some areas of the intestinal wall. Having “bad” bacteria present in the wrong amounts can cause the gut lining to become inflamed. These changes can affect the way we process food and lead to a myriad of digestive symptoms such as pain, bloating, gas, and food intolerances.

This means that some people who have problems with their gut bacteria

Having “bad” bacteria present in the wrong amounts can cause the gut lining to become inflamed. may find they can eat a presumably healthy, gluten free, diet, but still react to food in a negative way. The process linking changes in the gut lining to chronic inflammatory diseases is known as intestinal hyper-permeability or “leaky gut”. As it progresses, intestinal hyper-permeability is linked to other chronic inflammatory issues.

Building a healthy gut barrier The good news is that gut bacteria and the cells that make up our gut lining are highly responsive to what we feed them. Our gut bacteria eat what we eat, meaning it’s down to the quality of our diets. Eating a diet that contains too much processed food is known to blunt some of the protective effects of good gut bacteria. Certain “bad” bacterial species will thrive of diets high in refined carbohydrate and

sugars, making it important to limit these in our diets. Additionally, a lack of fibre and phytonutrients in highly processed foods can inhibit good bacteria from producing important nutrients which are needed to keep the gut lining cells healthy.

To support a strong and diverse population of good bacteria you need to eat a wide variety of colourful plant foods – in their whole and minimally processed forms. That should include colourful vegetables, fruits, herbs, spices, teas, nut and seeds, and if tolerated, gluten free whole grains, beans, and legumes.

Probiotic fermented foods may also help to diversify the microbiome.

Some commonly known probiotic food sources include sauerkraut, kimchi, kefir, dry cured meat, yogurt, raw milk cheese, kombucha and miso.

WHY ISN'T GLUTEN-FREE WORKING? Failure to respond to a gluten-free diet after being diagnosed with CD can be due to several reasons: • Not following a strict GF diet and still eating small amounts of gluten.

• Unknowingly ingesting unsuspected sources of gluten from crosscontamination or as an unexpected

additive such as in medications or supplements.

• Having another co-existing condition such as irritable bowel syndrome, bacterial or fungal overgrowth, or colitis causing other digestive issues.

• Refractory disease or complications of CD.

Chapman Tripp is proud to support Coeliac New Zealand AUCKLAND

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Environmental triggers Known to act like a second brain, our gut is highly sensitive to the wider environment and will react to all the usual environment stressors we experience. Research in animals and humans has suggested that stressful environments such as cold, heat, and chronic noise exposures can increase intestinal permeability, resulting in gut inflammation and changes to bacteria populations. Although people with CD are not exposed to stresses in the same manner done in the research, it does suggest that chronic psychological stresses may have a similar effect on the microbiome.

There are also many chemical environmental factors that could play a role in gut issues. Pesticides in particular are used profusely in our food supply and knowingly linked to negatively affect the gut and microbiome in numerous ways.

Glyphosate, the active chemical in Round Up, has been shown to preferentially kill off “good” bacteria, selectively encouraging the growth of clostridia and pseudomonas species. Longterm changes in the gut microbiome related to chronic, low-grade pesticide exposure can increase the risk of intestinal hyper-permeability and chronic inflammation.

Lack of sleep is also an environmental stressor that reduces

Having 'bad' bacteria present in the wrong amounts can cause the gut lining to become inflamed. our resilience. Inadequate sleep will suppress the immune system allowing and overgrowth of certain un-friendly bacteria. One of which is Klebsiella pneumoniae which is known to feed off refined off sugar and refined carbs.

Exercise provides a range of health benefits which also play a role in supporting gut health. People who regularly exercise tend to have higher levels protective Lactobacillus and Bifidobacterium, also show higher levels of protective short chain fatty acids which play a role in reducing gut inflammation.

However, since exercise is a stressor, too much or excessively intense exercise can be problematic. High intensity exercise can cause a lack of blood flow in the intestines, which if chronic, can increase stress hormones, inflammation, and lead to intestinal hyper-permeability. This means there is a “goldilocks” level of exercise for everyone, making the rest period equally as important.

KNOWN TO ACT LIKE A SECOND BRAIN, OUR G U T I S H I G H LY SENSITIVE TO THE WIDER . . . E N V I R O N M E N T. . .

Conclusions Dealing with chronic symptoms related to CD can become very challenging when it seems like

W H AT I S R E F R AC TO RY C D? • Refractory CD is a rare condition in which the symptoms of CD (and the loss of villi) do not improve despite many months of a strict gluten-free diet. Before making a diagnosis of refractory CD it is important to exclude complications of CD and

22 | Autumn 2020 Coeliac Link

other co-existing conditions.

• To diagnose refractory CD, the person needs to undergo a duodenal biopsy to examine specific changes in intestinal tissue and to rule out other potential underlying symptoms causes.

reactions are non specific and overlap.

Those who experience ongoing gut issues since starting a gluten free lifestyle, should know they’re not alone.

Research has shown several factors, beyond gluten, that can affect the gut barrier and microbiome, leading to inflammation. Getting to the real root of the issue is usually complicated and best undertaken with the guidance of a gut health expert, such as a specialist dietitian.

Although there are many unknowns when it comes to gut health and the microbiome, there are a few foundational strategies we all should be mindful of for general health.

For the most part, choosing a diet based on unprocessed wholefoods is essential to provide prebiotics and polyphenols to “good” bacteria. The more nourished and diverse our microbiome is, the better it will be at keeping “bad” bacteria under control. CL ____

• https://www.ncbi.nlm.nih.gov/pmc/articles/ PMC6722800/ • https://www.ncbi.nlm.nih.gov/pmc/articles/ PMC6996528/

S Y L V I A N O R T H is a Registered Dietitian and Integrative Nutritionist, and a new member of Coeliac NZ’s Medical Advisory Panel. She specialises in creating individual approaches to addressing digestive problems and food intolerances, inflammatory conditions, hormonal problems, weight-loss resistance, and poor energy levels.

Now Gluten Free Flowing through to stores from May 2020, check the packaging to be sure.

Range may vary by store.

Feature / F E A T U R E

Keeping SOCIALLY CONNECTED whilst living with a COMPLEX medical condition.

N UNEXPECTED

phone call at my desk one day heralded the opportunity to undertake a unique research study. At the other end of the line was a trustee of an estate advising that a bequest had been made to fund research into loneliness and social isolation ‘especially for those living with complex medical conditions’.

A recent focus of my research has been on ‘social connectedness’, which refers to the quality and quantity of one’s social ties, and therefore I was excited to take up the challenge.

Social relationships play an

24 | Autumn 2020 Coeliac Link

important role across many aspects of people’s lives. As social beings, we thrive on interactions with others; I’m sure most of us would agree that activities are generally more enjoyable when shared. Socially well-connected people tend to be happier and more resilient, and to rate their subjective wellbeing higher than those without robust social ties. People with poor health, however, are at risk of lower social connectedness.

There were several components to the two year project but I would like to share a few of the preliminary findings from an online survey of people who

self-reported that they had an ongoing medical condition that was substantially impacting their life and required treatments and services from multiple healthcare specialists, and who were aged 18-65.

Of the 305 survey respondents, 23 had coeliac disease (CD) – 15 reporting CD as their primary

medical condition (the one which they felt defined their medical status) and eight reporting it as a secondary condition.

I will focus on the 15 people (average age 42 years, 14 female) who reported CD as their primary medical condition.

Although we cannot consider such a small sample to be representative of individuals with CD, the following responses may be of interest to readers.

The average time since diagnosis of CD was nine years. When asked whether they experienced any barriers to participating in social activities, 13 of the 15 CD individuals responded that they ‘Often’ found that their dietary needs were not met at social events, with the remaining two noting that ‘Sometimes’ these needs were not met

(all respondents therefore finding this a barrier at times). Food is, of course, often central to social gatherings

... there is still much to be done to ensure that those with coeliac disease feel they are catered for in any social setting. and can present major challenges to feel they are catered for in any people with CD to manage. social setting. CL The potential for those with CD ____ to withdraw from everyday events This research was conducted with was also reflected in 10 out of 15 the aid of a generous bequest from respondents reporting that, during the estate of Dr Jeanette Crossley. the past four weeks, their health had interfered with their social activities D R W E N D Y W R A P S O N is a ‘All of the time’. However, when social psychologist and a Senior Research survey respondents were asked ‘Are Fellow in the School of Public Health and you content with the level of social Interdisciplinary Studies at Auckland University of Technology. She worked as a interaction you have with others’, nine researcher in the UK and Australia before respondents answered ‘Yes’ and six taking up her role at AUT. respondents said ‘No’. This is somewhat encouraging as it suggests that, even with the challenges they experienced, the majority of our sample were coping with the social side of living with CD. Nevertheless, while providing gluten free food at events has now become mainstream, it appears that there is still much to be done to ensure that those with CD

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TREATING CHILDREN

WITH RAISED COELIAC ANTIBODIES

D I F F I C U LT

question that we often encounter in laboratory medicine is, “What does it mean when a child has raised coeliac antibodies, such as anti-tissue transglutaminase antibodies (anti-tTG), and a normal duodenal biopsy?”.

To date, there has been some evidence that approximately a third of these children will go on to develop an abnormal biopsy consistent with coeliac disease (CD), a third will simply “outgrow” the positivity on blood tests and not develop CD, with the remaining continuing to have antibody positivity and a normal biopsy.

A recent large study aimed to address the questions, “What

26 | Autumn 2020 Coeliac Link

proportion of children with antibody positivity and a normal biopsy develop CD in long term follow up?” And, “Can we predict which children of these will develop CD?” This Italian study, recently published in the Journal Gastroenterology, followed 340 children aged 2-18 years who were shown to be repeatedly positive for anti-tTG antibodies, as well as antiendomysial antibody (EMA) and carried HLA DQ2 or DQ8 positive haplotypes, but did not have histological changes associated with CD on biopsy. Half of the patients were tested as they had a first degree relative with CD, while another 15% were tested due to a coexisting autoimmune condition, such as type 1 diabetes.

Sixty of the 340 children commenced a gluten-free diet

either because of symptoms suggestive of CD (mostly gastrointestinal) or due to parental choice. The remaining 280 children continued on a gluten-containing diet and were followed every 6 months for antibody testing and clinical features. A biopsy was performed every two years. Over the course of the study, patients were followed up for an average of 60 months (from a minimum of 18 months to a maximum of 12 years).

What did they find?

On follow up, only a small number of children 42/280 (15%) developed a flat mucosa at the biannual histological evaluation, 89/280 (32%) of patients stopped producing antibodies, while the majority 166/280 (59%) continued to produce antibodies with ongoing normal biopsies. The authors did, however, note that the longer the patient was monitored, the more likely they were to develop CD, with 43% of patients who had been monitored for 12 years developing CD. Was there a way to identify which children developed CD? The authors of this study identified a number of factors that helped identify children who were likely to develop CD over time. These included: 1. Children that developed flat mucosa over time showed an increased number of Gamma Delta lymphocytes in the first biopsy compared with children

who did not develop CD. Gamma Delta lymphocytes are an unusual population of inflammatory cells that are found mostly in the gut.

An increased number of these cells suggests the initial stage of an inflammatory response.

2. The age at which the blood tests were positive. Only 7% children younger than 3 years of age developed flat mucosa compared with 51% of those enrolled between 3 and 10 years of age and 55% of those enrolled after 10 years of age. This means that especially in young children, transient antibody positivity may be a sign of a maturing gut (as is often seen in “allergic” IgE antibodies) and is not associated with the long term development of CD. 3. Double positivity (homozygosity) for the HLA DQB1*02 gene, meaning the greater the gene load the greater the chance of developing CD. What does this mean for us in clinical practice?

This is an interesting article that highlights children with no symptoms of CD but positive antibodies ____

Article reprinted with permission by Coeliac Australia.

The study cited in the article is Auricchio R, Mandile R, Del Vecchio MR, Scapaticci S, Galatola M, Maglio MA, Discepolo V, Miele E, Cielo D, Troncone R, Greco L. Progression of Celiac Disease in Children With Antibodies Against Tissue Transglutaminase and Normal Duodenal Architecture. Gastroenterology. 2019 Apr 9.

The abstract is available at https://www.gastrojournal. org/article/S0016-5085(19)35671-9/abstract

on blood tests should not be advised to go on a gluten free diet, especially if the child is under the age of three. These patients need to be monitored for changes in symptoms, antibody positive and possibly monitored with biopsies every second year. Hopefully this will be reassuring to parents who are understandably concerned about what to do when presented with this situation. CL D R L O U I S E W I E N H O L T is Manager of Business Development at the Royal College of Pathologists of Australasia Quality Assurance Programs (RCPAQAP) and a lecturer at the Sydney Medical School, University of Sydney. She has a Bachelor of Biomedical Science, a Master’s of Science in Medicine specialising in coeliac disease, a Doctorate of Business Administration

focusing on quality in diagnostic pathology testing and is a Fellow of the Faculty of Science of the Royal College of Pathologist of Australasia in the discipline of Immunopathology. Louise is also a member of the Coeliac Australia Medical Advisory Committee (MAC) and the Laboratory Practice Committee of the Australian Society of Clinical Immunology and Allergy (ASCIA). She has held a number of management roles in Immunology and Infectious Serology and has co-authored over 20 peer reviewed publications.

Feature / T R A V E L

S IX WE EK S I N EU RO P E

A gluten-free paradise Verity Craft dishes up gluten-free TRAVEL TIPS and FOOD DESTINATIONS R AV E L L I N G

when you’ve got coeliac disease can be tricky. Travelling for six weeks to multiple cities and countries can be even trickier – but I’m happy to tell you that it is completely possible! This past December and January, my husband Matt and I went on a belated honeymoon to New York and Europe.

We wanted to experience a white Christmas, which we didn’t get – but we did manage to miss the fallout from COVID-19.

I was worried before we went about how we’d go food wise, particularly in places like Germany where their diet is very starch-heavy, and gluten abounds. Luckily, with a little research, I was able to find places for us to safely eat delicious meals in every place we visited. Here’s our coeliac-friendly odyssey through some of Europe’s most visited cities: Gasthof Obermaier, Munich It’s a little hard going to Munich and not being able to eat the amazing Bavarian food or join in the frivolities at the beer halls. This traditional Bavarian restaurant will make up for it in spades, with a separate gluten-free menu (including gluten-free schnitzel!) and multiple gluten free beer options.

Palæo, Copenhagen This is a fantastic chain across Copenhagen which serves (obviously) paleo food options and is therefore 100% gluten free. We visited the one at the Torvehallerne Food Hall, which is also conveniently just a couple

28 | Autumn 2020 Coeliac Link

of minutes’ walk from Landbageriet (Naturbageriet), a bakery with a good range of gluten-free goodies.

Helmut Newcake, Paris I mean, have you even gone to Paris if you haven’t stuffed yourself full of pastries? Plenty of people have heard of Noglu, but my heart belongs to Helmut Newcake, a 100% gluten-free patisserie with a couple of locations in Paris. We skipped meals and instead just gorged ourselves on their delicious treats – and never regretted it! Just be ready to spend some money as you’ll be tempted by everything there.

Lily Burger, Berlin Lily Burger was so delicious we went back twice – they make insanely

delicious and insanely huge burgers.

They’re also famous for their vegan menu, so even if you’re not a meat eater there’s something for you.

Kivi Paber Käärid, Tallinn Loved being five minutes’ walk from this 100% gluten-free restaurant in Tallinn, Estonia – everything we tried over our three visits was delicious and it was so nice knowing that we could safely eat everything!

Leon, London It’s always awesome when you can go to a fast food place and actually eat there – and Leon is both fast and delicious. Good for a slightly cheaper but also healthier options, they have branches all over London. CL

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TO P T I P S F O R T R AV E L L I N G W I T H C D • Research, research, research – you can find coeliac-safe dining options in most cities; they’re just not always easy to find. Google restaurants look at gluten free travel blogs, and try using hashtags to find places on Instagram e.g. #glutenfreeberlin.

• Create a list of recommended cafes, by country and link to Google Maps. Add notes about what kind of food it sells and what people had said about it (e.g. 100% gluten free vs. warnings to be careful to fully explain cross-contamination).

Then download those maps to use offline – this is super easy to do, just google how.

• Check which airlines do coeliacfriendly meals before you book – and keep snacks in your bag throughout the day (and especially for flights!) as you never know when you may not be able to access gluten free foods.

• Book Airbnb or other accommodation that has a kitchen so you can at least sort breakfast and prepack another meal for on the go eating.

PROUD TO SUPPORT COELIAC AWARENESS WEEK

Gluten-free / M E A L I N S P I R A T I O N

TIPS •••

Alana Scott pikelet stack.

Make ahead and freeze for an E A S Y lunchbox filler

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Countdown corn, bacon and zucchini rice slice.

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It will be up to you whether you use a bento box, layer jar, thermos, or reusable food wrap, and how you 'Cook and share' your lunch box ideas. Here’s a couple of options: • A colourful poster with some catch phrases to promote the healthy, gluten-free message • A labelled photo collage and recipes of your healthy lunch box • Social sharing recipes and video on Facebook or Instagram.

W I N one of 10 gift packs value $50.

ID

holding a competition to design a healthy glutenfree lunch box. Look out for advice from our registered dietitians online about different elements of what makes a healthy meal. This will help you to create a delicious and nutritious packed lunch...

And don’t forget to be creative with your presentation!

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Alana Scott banana bread.

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Juliane Winter-Noakes soft lemon sponge biscuits.

PHOTOGRAPHY: NICOLE PERCY (BENTO AND LAYERED JAR)

There will be five winners and five runners-up selected. Look out for competition details on Facebook and email ahead of CAW. See the member only section of the website for full recipes of these delicious meal ideas.

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Alana Scott cheesy, chicken fritters.

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Alana Scott tasty egg wraps.

TIPS ••• These bites are the perfect treat for little mouths – kids will L O V E .

Alana Scott tempeh rice rolls.

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Alana Scott dark chocolate and peanut butter energy bites.

Alana Scott snack bars.

coeliac.org.nz | 31

LO O K FO R TH E CROSSED GRAIN LO G O Your easy choice when shopping gluten free

TM

TM

When you’re standing in front of a shelf deciding on which GF products to buy, our S H O P P I N G G U I D E is an easy way to check which brands are suitable for coeliacs, or those with gluten sensitivity.

coeliac.org.nz

Supporting gluten-free for life every day.

Crossed Grain™ A C C R E D I T E D P A R T N E R S

Bakels PROUDLY SUPPORT COELIAC AWARENESS WEEK JUNE 14- 20 | 2020

Bakels Gluten Free Flour is a quality flour suitable as a direct replacement for standard flour in many types of baking.

Visit bakels.co.nz for recipes

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CNZ picks / B I T E S A N D D E L I G H T S

iHowler Hotdogs are rolling out thei igluten free mini hotdog to accompanyi ithe regular size – popular for platters,i ias a snack option and for kids’ parties!i iYum! howlerhotdogs.co.nzi

iSmooshed Wholefood Ballsi icontain just a handful of naturali iingredients, no dded sugar and arei iminimally processed. tasti.co.nzi iOh, hello gorgeous gluten freei imuesli slice! This delicious creationi ifeatures Healtheries Gluten Freei iBerry De-Light Cereal and is perfecti ifor a quick breakfast on the go or ai ifilling snack. healtheries.co.nzi

Bakels 'Gold Label' range is scrumptious, moist and full of flavour. It makes preparing gluten-free cupcakes, cakes or muffins as easy as one two three. nzbakels.co.nz

Gluten-free

BITES

&

delights

iHave fresh bread anytime withi iThe Alternative Bread Company specialityi ibread mix range. Crossed Grain logoi iaccredited, dairy, soy, nut and egg free.i ialternativebread.co.nzi

34 | Autumn 2020 Coeliac Link

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iCup convenience for a tasty snack or meal ini ian instant! High in wholegrains, Yoodles browni irice noodle cups are gluten free, and containi ino artificial colours, no artificial flavours, noi ipreservatives and no added MSG. Available ini ichicken and beef flavours. acton.co.nzi

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Wahiki coconut ice cream comes in a new boysenberry flavour – the perfect topping for a winter dessert! wahiki.co.nzi

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Made lovingly by hand this delicious Twocan gluten free peanut butter is made from double ground slow roasted peanuts (including the skins for additional fibre and goodness). twocanfoods.comi

Check out the newi Free FromiGluten bite-sizedi crackers – they’re superi crunchy and full of flavour.i A great lunchbox option,i also suitable for vegan diets!i icountdown.co.nzi

Recipes / S A L L Y H O L L A N D

B A B Y S U LT A N A C A K E S

GLUTEN-FREE FLOUR MIX

2 cups rice flour 1 cup tapioca flour (also known as arrowroot) 1 cup cornflour 2 tbsp xanthan gum

1. Heat oven to 170°C. 2. Cream butter and sugar until light and fluffy.

3. Add eggs, one at a time,

CAKES

250 g butter ¾ cup sugar 4 large eggs 1¼ cups gluten-free flour mix 2 tsp gluten-free baking powder 1 cup sultanas 1 lemon, finely grated

beating well after each addition.

4. Gently mix in the sifted gluten-free flour mix and the baking powder.

4. Finally, mix in the sultanas and lemon zest.

5. Spoon out into a 12-hole muffin tray, lined with paper cases or well greased with oil or butter.

6. Bake for about 20–25 minutes until the cakes are golden and the tops spring back when pressed with a finger.

Cool on a wire rack. ____

Makes 12 For Coeliac Awareness Week we are sharing a recipe from Sally Holland’s Goodbye Gluten book. Sally cut her teeth in the New Zealand Woman’s Weekly Test Kitchen under food editor Tui Flower and drew on her home science background to create delicious gluten-free dishes when her husband was diagnosed with coeliac disease. The success of the baking in the book is based around her flour mix featured above. ____

Sally Holland is proud to support Coeliac Awareness Week, Gluten-free High Tea.

HIGH TEA

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CO O RD INATO RS

/ Directory

••• Our volunteer coordinators are L I S T E D on the following page.

•••

REGIONAL DIRECTORY

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Northland Whangarei

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Warkworth Hibiscus Coast Coromandel

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Tauranga/Katikati

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Waikato

Julian

AUCKLAND

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Rotorua

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n d K i d s Clu

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Taupo Taranaki Hakwes Bay

Wairarapa

Nelson

WELLINGTON

Blenheim

Buller/Karamea Hokitika/West Coast

North Canterbury (Amuri) CHRISTCHURCH

Ashburton South Canterbury Oamaru/Otago Queenstown DUNEDIN

Lisa, D

Southland

CO NTAC T

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id s Clu b

D E TA IL S

Please email: admin@coeliac.org.nz to check there is an active volunteer in your area – we can then connect you to each other!

coeliac.org.nz | 37

Directory / A R E A C O O R D I N A T O R S

NORTH

ISLAN D

North of Auckland Rodney Julienne Law ____

Whangarei Natalie Carmichael FBK Whangarei Coeliac Group ____

Hibiscus Coast Dannielle Walker

Eastern BOP Kids Club Rotorua Lizzy Eckersley

Christchurch Kids Club Christchurch Pip Meads

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South Waikato Taupo Jill Henson

North Canterbury Christchurch Rob Rae

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Hawkes Bay Kids Club Napier/Hastings Fiona Lambert and Sam Wemyss

South Canterbury Nancy Webster and Joan Simpson

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East Otago Dunedin Heather Wilson

Wellington Kids Club Wellington Nerys Foster

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Auckland Auckland West/Central Vincent Colombie Auckland North/East Ben Grant

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Otago Kids Club Rebecca Heffernan

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SOUTH

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Nelson Margaret Watson

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Auckland Kids Club Auckland Juliane Winter-Noakes FBK Coeliac NZ Auckland Kids Club

Marlborough Blenheim Libby and Sophie Westenra FBK Coeliac Marlborough Support Group

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Coromandel Thames Jan Autumn

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Waikato Hamilton Marina Grantham-Campbell

West Coast West/Central Sandra and Karl Jackson

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Hamilton Kids Club Hamilton Leagh-Ann Wesselson

North Canterbury Amuri Danette Moriarty

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Dunedin Kids Club Dunedin Lisa Russell ____

W E N E E D YO U !

••• If there is no coordinator in your A R E A please get in touch!

West Coast/Buller Barry Chalmers

Join the team to learn new skills and connect with people in your community

IT’S B ETTE R TO G ETH E R

FIND OUT HOW! Email: admin@coeliac.org.nz

VOLUNTEERING IS ESSENTIAL TO OUR O RG A N I SAT I O N

____

SOPHIE

Volunteer Coordinator

Countdown understands how difficult it can be to live with a food allergy or intolerance.

That’s why we created our Free From Gluten range of biscuits, so you can enjoy the food you love without having to compromise on quality.

Range may vary by store.

Range may vary by store.

a little help for every body

NEW CEREAL RANGE

GLUTEN FREE CERT TM

HEALTH STAR RATING

WITH PREBIOTICS AND PROBIOTICS

NO ARTIFICIAL SWEETENERS, FLAVOURS, COLOURS OR PRESERVATIVES

10851_NZ

FOR THE ENTIRE FAMILY!