Lived experience of coeliac disease


Getting diagnosed with coeliac disease is completely different for everyone. However, whatever symptoms that are experienced prior to diagnosis, for most people the challenges, adjustments, and feelings after diagnosis are consistent and provide an opportunity for learning. 

Recently we asked Coeliac NZ members to share their experiences, concerns, and difficulties around making everyday food decisions while living with coeliac disease. It was incredible hearing some of their stories and seeing how so many of them struggle with the same things – as well as highlighting tips for coping with everyday challenges. Across the board, some of the things that seem to be consistent across everyone’s experiences are:

  • Dining out is hard – especially with so many places marking options as GF on menus but then not making them appropriate for coeliacs to eat.
  • Eating gluten free is expensive!
  • A strict gluten free diet is vital – it makes such a big difference to the way you feel and your overall health.
  • The symptoms experienced before being diagnosed don’t always go away straight after going gluten free – and often can be more acute when you do get accidentally “glutened”.

But of course, despite some common factors, everyone’s experience of living gluten free for life are different as diagnosis occurred at different stages of their life.

Robyn’s story

"Unlike many others, I was born with coeliac disease. 54 years ago, I was diagnosed at only six months old when the formula I was put on had gluten in it. As a baby, I was projectile vomiting and had all sorts of stomach issues before I was diagnosed.

As a kid, I felt disadvantaged and different everywhere I went, I couldn’t eat anything. Mum did the best she could, but back then there were no GF flours, no awareness, no options.

At 9, I was sent to boarding school where they weren’t at all interested in providing a gluten free diet. I was told “eat what you’re given, or you’ll go hungry.” Consequently, I suffered from severe constipation, and I put on quite a lot of weight and generally felt unwell. By the time I was 18, I wasn’t well at all, ending up in hospital for a week.  Despite trying, it was still hard to find gluten free food and because I felt sick all the time I didn’t want to eat. Going out just wasn’t an option.

It wasn’t until I moved to New Zealand in my early 30s that I found an amazing gastroenterologist and things started to change. Because of the long-term damage to my gut and resulting terrible digestion, my bowel wasn’t looking good at all – it had an area that was transparent and kept twisting on itself from the severe bloating. They ended up removing that part of the bowel and it took about a year for some of my symptoms to settle down.

Following the removal of part of my bowel, I knew that I just had to follow a strict diet. It wasn’t easy – I’d already been living on a restricted diet for years. I literally ate brown rice, soya milk, and pumpkin because I knew they weren’t going to inflame my gut. However, even when I was super strict, I still didn’t feel 100%. I felt like I had chronic fatigue even though I was following the diet, exercising, and sleeping well. It turned out I was still getting glutened because I wasn’t taking the full care I should have been. I was assuming too many things. I started being more diligent at home, would only eat things that explicitly said gluten free, and made it my business to read and understand labels properly.

Eating out has always been a challenge – some friends still struggle to have us round for dinner and I became self-conscious about it. I still get a bit nervous going somewhere I don’t know so I do my research before I get there. You can end up spending a good part of your life feeling misunderstood. I have learnt that being upfront is the best approach.

These days, wild horses couldn’t make me eat gluten (even being offered money to do so hasn’t tempted me!) For me, the key is to eat nutritionally well, avoiding pre-prepared foods and going for naturally gluten free foods. As a family, we’re probably 95% GF – we use the gluten free WOOP box, and all our birthday cakes and treats are always gluten free. My husband doesn’t notice a lot of difference from a taste perspective and often will ask for GF treats instead – homemade of course.

I’ve always found being a member of Coeliac NZ valuable and volunteered for several years on the Board as I wanted to add some value to others through my experience and journey.

I’ve been super strict for the last 15 years and things have become much easier. It is important to remember that it is a journey, and an individual journey as we are all different, there is no quick fix.  Now when I wake up, I have energy right throughout the day because of my healthy choices.  Do I sometimes wish I could eat anything? Actually no. I don’t believe I miss out as my choices are made from an overall wellness and nutrition perspective. Feeling great every day is important – it’s a choice I make as I want to be the best version of myself.  We are not victims; we are GF wellness warriors."

Cathy’s story

"My daughter Jade was diagnosed with coeliac disease when she was six years old; she’s now 13. She had always had trouble with her bowels and when she started eating solids, she never wanted to eat bread. After a blood test showed that her coeliac markers were 380 (they’re meant to be 15 or under!) she went to see the specialist. It was just awful seeing humungous blisters all over her poor little tummy.

Almost immediately after we stopped the gluten her tummy was a lot better – she wasn’t bloated, she went to the toilet more, had more energy, and was much calmer.  To begin with, it was more time consuming. We’d constantly be checking nutritional packets and we’d have to let people know anywhere she went. It’s a lot more organisation, especially if we’re going away as there’s no guarantee of gluten free options. When she goes to birthday parties, I’ll pack her a little package of food to take, and some friends’ mums will do GF food, although she often feels left out. All in all, though, she copes amazingly and is happy to feel normal rather than vomiting or getting a sore stomach whenever she eats.

It would be good if gluten free food was more economical, as it can be very expensive – anything that says gluten free on it is usually $2 or $3 more expensive. Over the years though, I’ve found that by sticking to the basics of meat, chicken, fruit, and veggies and purchasing foods that have no gluten but aren’t labelled gluten free, having to buy expensive gluten-free labelled food is a rarity.

Now, we basically all eat gluten free in the house – once we got our heads around it, it wasn’t that hard. I’ve noticed a big difference in how I feel too – I’m not coeliac but am gluten intolerant, and I used to be constantly fatigued and get bad arthritis pain in the joints of my fingers. Now the pain’s gone and I have far more energy. 

Going out for special occasions can be difficult, even though more and more establishments are catering for gluten-free people now. A few times we haven’t been able to go out with family because we can’t trust places. We had a horrible experience at a café earlier this year when I asked the waitress three times if they service coeliacs. After my daughter got very sick later that night, my mother called the café to complain and the chef said, “We don’t serve coeliacs.” It was a real punch in the guts.

Sometimes I feel that people think it’s a lifestyle choice. Until you explain that it’s medical, they just don’t understand."

Katie’s story

"I was diagnosed three years ago, along with one of my twins, Tom (now 6). Before diagnosis, life was completely different. We could eat out wherever and whenever we wanted and take part in social activities without much planning. Tom was exhibiting extreme behaviours around food though: crying whenever he sat down to eat, complaining of being hungry but then crying whenever he ate. My sister, whose daughter had already been diagnosed with coeliac disease, said we needed to get tested. After taking him in for a blood test, I realised that my problems with fatigue and sore gut could be related as well, so I was tested as well, and we both had biopsies.

One of the benefits of the fact that I’m coeliac is that Tom can identify. He feels a bit special that he and I have something that’s just ours, and I’m able to empathise far more when he’s missing out on things like goodies at birthday parties. We love the coeliac kids club get togethers because he’s allowed to eat anything he wants. His face lights up! We’ve been lucky lately – the last two birthday parties he’s been to, the mum has made the whole party gluten free, including the cake. I’ve never asked for it, but they’ve done it to include Tom and I think that’s just incredible.

Tom struggles with his diagnosis every day though, and I also find it difficult. I love food and feel like I miss out a lot. I’ve had bouts of depression since I was diagnosed, and I think that’s one of the contributing factors. It’s more expensive to live gluten free. I’ve been able to trial lots of different things, which is especially important with a kid who doesn’t like lots of foods. We do get the child disability allowance which is just under $50/week for Tom which helps.

We don’t eat out much because it’s quite frustrating. I’m always embarrassed to make a fuss, but I often must ask a lot of questions to check how knowledgeable the chef is. Having always worked in hospitality it was people like me that I used to get so annoyed about – now I’m one of them and I regret that I wasn’t more understanding! It’s a big pain point of mine when restaurants label things as GF but they’re not coeliac friendly because they’re cooked in the same oil – how easy would it be for fish and chip places to have a separate fryer just for chips? I’d like to see coeliac friendly menus – maybe CF could be a new label!

I am finding that over time the hospitality venues we visit are becoming more and more understanding of the issues around cross contamination. We’ve found a few favourite places where I know they’ll try their best and I feel safe. Fifth Street in Christchurch is great; one of their chefs is coeliac and ¾ of the menu is GF. I’m confident that we won’t be glutened there and it makes me feel so much more relaxed and at ease."

Petula’s story

"I’m never sick, but for about three years I just kept getting crook – I’d have lots of bloating, would get these horrible blind pimples (which was a bit disconcerting in my late 40s!), my bowel movements were changing, and felt like I had morning sickness 24/7, I was so nauseous. Every time I ate, I’d feel sick.

I’m not really a doctor person but thought I’d better get checked out – and for a long time the doctor said it was probably just menopause kicking in. Even after I got shingles and was losing a lot of weight, the doctor still didn’t think anything was very wrong. I thought I’d have to keep living with it.

Soon I started getting headaches and terrible fatigue – I couldn’t cope with work and sometimes I felt like I couldn’t cope with life. My weight kept dropping – down from 56kg to 47kg – and I genuinely thought I was dying. I thought I must have had a brain tumour or stomach cancer because I was in so much pain all the time.

Finally, I got my doctor to test me for everything and my antibodies came back through the roof. I went to see a specialist, who thought I had coeliac disease and put me through six weeks of gluten to get tested. It turned out I had a chronic case – my small intestine was completely smooth (which isn’t good!). I’d done a fair amount of damage over the years.

Once I was diagnosed, I felt relieved. I knew what I had and could work on healing the damage. At the beginning, it was challenging. I worked in food, and I still didn’t really understand the severity of cross contamination. I eventually decided to give up my job in the food industry because I couldn’t be around so much gluten.

Definitely not having gluten has changed my life – if I had kept eating it, I would have wasted away. After cutting gluten out of my diet, I started putting a bit of weight on and it took a while for my skin to improve but I’m still on the way to getting totally well. If I get glutened accidentally now it knocks me around so badly. I’ve developed a few other sensitivities too – I can’t go near dairy now.

Living with coeliac disease changes how spontaneous you can be – it’s no longer an easy thing to pop out to a restaurant. You do feel very awkward going out as eating is very social. When I say no to food, people always think I’m dieting and tell me I’m skinny enough as it is – they don’t realise how much I wish I could dig in!

At home, I cook everything gluten free but it’s more challenging. Everything is more expensive, and you seem to need six different flours for everything! I’ve been really impressed by my husband and youngest son who still lives with us though; they are a hundred percent behind me. When others come around, they look out to make sure I don’t get glutened, and they’ll warn me if something’s been cross contaminated. 

For me, living with coeliac disease has completely changed my life and my career."

Strategies for coping with a strict GF diet

It is important to have a supportivecoeliac network to help establish effective coping strategies to live well gluten free. This is particularly so for children who may have difficulty accepting the diagnosis. Like Robyn, Cathy and Petula’s families there are plenty of others also facing similar experiences after diagnosis that may assist you in understanding your own journey. 

Check out the  website to find out if membership to Coeliac NZ is right for you.