Finding a new tune on life

EW TUNE finding aN

ON LIFE

Hayley Repton shares with Coeliac Link why MAKING A FILM encouraging coeliacs to FIND their INNER VOICE followed her own PERSONAL JOURNEY.

WAS diagnosed with coeliac disease in April 2019. The day I was told, I felt like I had been slapped around the face with a wet fish. Fortunately for me, I didn’t have many of the typical symptoms, but it was found by chance through another blood test, which led to the endoscopy and biopsy to confirm it.

I just knew I had to put the diagnosis to good use and raise as much awareness as possible. Within a couple of weeks, I started to draft ideas and I began writing the short film ‘Glutened’.

After the diagnosis, I had followed a lot of coeliac support groups on social media and many of the coeliac members were posting about the anxiety around social events. It was clear that some coeliacs were surrounded by people who don’t take the autoimmune disease seriously or think that its ok to take ‘cheat days!’ Oh no, no, no! That was a major driver for me to make the film, with the aim of giving these misunderstood people a stronger voice. I wanted to make sure that I portrayed a large proportion of their stories through the one character. That was really important to me. I believe that sometimes getting a point or emotion across to someone verbally, doesn’t necessarily have the same impact as showing them

something through sound, vision and storytelling. Most of the content I have seen is focused on the physical, rather than the effects that coeliac disease can have on someone mentally.

There were many different creative ideas and many ways to tackle the subject, but I was finally happy with the vision. It is a rhythmic, WHEN FOUND short film which expresses the impact A SUBJECT that everyday life has LIKE COELIAC on a newly diagnosed coeliac and how she DISEASE THAT discovers her own I’M PASSIONATE tempo. The main ABOUT, I HAD NO character Holly is an Irish woman who CHOICE BUT TO takes the treatment MAKE THE FILM! following diagnosis seriously. This means she has to say goodbye to all thing’s gluten, and this sudden lifestyle change takes her on a turbulent journey; with a mix of frustrating occasions, a splash of envious times and a sprinkling of lighthearted moments. It covers supermarket shopping, social gatherings, reminiscing on spontaneous times and everyday food prep. The film also highlights the importance of taking crosscontamination seriously. Sound design plays a big part in the film. I wanted the audience to be with the character throughout, as though they were stepping into her shoes. At times, we hear Holly’s inner body sounds as I wanted the viewer to totally immerse themselves into what the character was feeling and experiencing. The rhythmic effect throughout the film also reflects the planning and incessant vigilance a coeliac must have in their everyday life. When making the film there were times of doubt and I was anxious about releasing the film, but it’s had positive reactions from companies and charities across the globe. I’ve received hundreds of messages of appreciation from coeliacs saying that they laughed, cried and that they can use it as a tool to share with people who are not taking it seriously or who are unfamiliar with coeliac disease. This response from the tight-knit coeliac community makes me eager to make more. I am extremely grateful to everyone who was involved and played a part in some way. Hopefully, this is the first, but not the last film I produce on the subject as there are still so many stories to tell and many ways to do it. Watch this space. CL

To view Hayley's video visit vimeo.com/486284734

HAYLEY REPTON is a filmmaker based in Manchester UK. She is primarily an Editor but occasionally writes and directs too. Her passion for music and sound design stems from her background as a DJ which kicked off in 2007. A decade later, in her midtwenties she decided that she wanted to start a career in filmmaking. She went to university to study film production at 27 and has never looked back

TURNING LEMONS INTO LEMONADE

JODIE CLAPP talks about her NEW BOOK 'What the...? I can't eat that anymore?' and the rewarding experience of starting ‘THE GF HUB’.

ELLO CNZ members, my name is Jodie, and I'd like to share with you a little journey of turning lemons into lemonade. Have you gone through years of your life knowing that there was something wrong inside you but couldn't figure it out? Have you spent countless visits at the doctors trying to get some help and guidance, only to walk out feeling that it's apparently "All in your head"? Know, you're not alone.

I’m a true-blue Aussie girl through and through (and like a lot of kiwi’s) aside from work, my life consisted of BBQs on the beach, beer and galivanting around the world, tantalising my taste buds with some of the most sumptuous foods available! I ate my way around the world without getting a single belly ache, so it was the biggest surprise to me when a haematologist gave me the life-changing news: "You have coeliac disease!"

Coeliac disease never once entered my mind as a possible cause for my health concerns, so the diagnosis hit me like a slap across the face. In a flash, I felt like my life of culinary, care-free adventures was ripped away from me. I didn't get sick from food, so why can't I eat certain foods now? Turns out, I was an 'asymptomatic' aka 'silent' coeliac disease sufferer.

From that very moment, I cut out gluten immediately, but what followed was completely unexpected. My body deteriorated quickly; I was breaking out in rashes, I had flu-like symptoms for months, but no cold and I felt like I was losing my mind. Needing to understand what was happening, I dove deep into research of this disease and uncovered some shocking truths along the way to discovering a new way to live. Firstly, I learned that gluten can have an addictive hold over the brain and body. So, it turns out I was actually detoxing from this druglike effect ! I was relieved to know I wasn't going crazy after all. Remarkably, I was coming down and having withdrawal symptoms for months from this drug-like effect that had been going on in my brain for the best part of 30 years. Wow! The second shocking truth I learned was that even though I had removed gluten from my diet, I was still at risk of staying sick. Some gluten-free foods (which most people reach for when newly diagnosed) can cause inflammation in the gut long after gluten is removed. So you think you are supporting your body by not eating gluten, but perhaps wonder why a couple of years later, you really don’t feel as amazing as you are supposed to. Inflammation can affect every part AS A charitable organisation we are reliant on the philanthropic dollar which is particularly competitive in this COVID 19 times.

of the body from your little pinkie toe on your foot, to the hair on your head and it usually starts in the gut.

So, what was supposed to be a simple diet switch was not what it seemed. This was the fundamental changing point in my life when lemons became lemonade. I spent the next few years reading, studying, attending seminars, and speaking with physicians worldwide to better understand this disease and take back some control of my life and my body. After a few years of successes and failures, I wanted to share my journey and what I learned along the way to help as many others as possible. So, I wrote a book titled "What the...? I can't eat that anymore?" and started a community centred blog called 'The GF Hub.' CL

Read the full article in the CNZ newsroom.

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NAVIGATING the SUPERMARKET

Coeliac Link talks to COUNTDOWN nutritionist DEB SUE about supermarket shopping.

F YOU HAVE coeliac disease, it’s highly likely that you are already a master label reader when you’re shopping for food. However, if you’ve recently been diagnosed then knowing what to look for can feel like a minefield and very overwhelming. Deb Sue, Countdown’s in-house nutritionist, has shared with us some of her top advice and tips to help navigate the supermarket and ease the burden of being newly gluten free.

The good news is that being gluten free today is a lot easier than a few years ago! Lots of food producers have invested in creating plenty of variety for coeliacs. No longer is being glutenfree considered a passing diet fad; now there are complete sections of aisles dedicated to coeliacs.

Gluten is a protein found in wheat, rye, barley and oats. In New Zealand, if a product contains gluten or wheat then under the Food Standards Code, it must be declared on the ingredient list or on the allergy statement (usually found on the back underneath the nutrition information panel).

There are lots of naturally gluten free foods already available of course. These include all fruit and vegetables, plain meat poultry and seafood, eggs, dairy products (unflavoured milk, plain yoghurt, cheeses), unflavoured beans and legumes, plain nuts and seeds, plain rice, butter and oils.

As a newly diagnosed coeliac, you’ll need to get into the practice of double-checking ingredient labels before you buy or eat new products. Some manufacturers add gluten to products that you wouldn’t even suspect would include gluten - like soup, salad dressing or potato chips! So when grocery shopping, it’s always best to double check the ingredient list, even on products that state they are gluten free.

You're looking for ‘Gluten Free = nil detected’, on the nutrition information panel, or no ingredients containing gluten. Otherwise, look for products with the Crossed Grain Logo. If a product displays this logo it has been certified as GF by CNZ but be aware that not all gluten free products carry this logo.

It’s also helpful to know that other countries have different definitions of what's gluten free. In New Zealand (and Australia), our Food Standards Code defines gluten free as ‘nil gluten detected’, whereas in Europe and the United States gluten free is defined as less than 20 parts per million. So, if you’re eating food imported from Europe or America that state they are GF, it pays to read the food label to check how much gluten it actually contains.

Deb Sue

Another watch out is marinated meats, rubs and seasonings;. Many marinades include soy, which isn’t always gluten free. I like to use tamari when I am making marinades; it is a good alternative as almost all versions are gluten free. Also lots of seasonings or rubs also have wheat flour as a carrier for the herbs or spices, so please always double check the ingredients list.

You might also think that some alcohol is off limits, however, even brewers are considering coeliacs in their range and you’ll be pleased to know that there are a variety of beers that are now gluten free.. Finally, I know that one of the biggest complaints from people with coeliac disease is that they miss treats like biscuits, cakes and snacks like chips. At Countdown, we’ve got an entire range dedicated to coeliacs. Check out our ‘Free From Gluten’ range in the health food aisle, there are lots of biscuits, snacks and cake mixes. Not only have these products been tested to guarantee that they are gluten free, they’re also tasty and affordable. CL

If you are unsure about your dietary requirements, please see a registered dietitian for more advice.

IF YOU’VE RECENTLY BEEN DIAGNOSED THEN KNOWING WHAT TO LOOK FOR CAN FEEL LIKE A MINEFIELD AND VERY OVERWHELMING.