Helpline: 09 820 5157

Rachel Forman - Actress

Rachel Forman, actress, who has stared in Shortland St and in many theatre productions including Top Girls, was diagnosed as a coeliac after going off a gluten free diet and feeling very unwell.

I was diagnosed with coeliac disease at the end of 2009. I had been loosely following a gluten free diet since 2003. At that time I was very uneducated about what being gluten free meant, it was a very popular diet to be on (as it is now) so I just assumed gluten was bad for everyone. There are tonnes of myths out there about gluten and it wasn’t until I really started looking into the facts behind it that I heard of this thing called coeliac disease.

In 2003 I was in my first year at Toi Whakaari: New Zealand Drama School. I was 21 and had been suffering from repetitive UTI's as well as occasional fatigue, bloating and headaches. I had also developed some small patches of Vitiligo (yes, the same thing Michael Jackson had). It certainly was a curious bunch of symptoms, especially as none of them were consistent or overwhelming. The UTI’s were annoying and painful. My GP suggested the symptoms were stress related but I really wanted more of an explanation.
The thought of the Vitiligo spreading was incentive enough. So I went to see a naturopath in Wellington who had a very good reputation. She straightaway suggested a gluten free diet as well as several dietary supplements. At this time I was still unaware of coeliac disease and had naively started a “gluten free” diet without really knowing what it was. I had basically taken it as meaning I now ate gluten free bread and pasta, I never checked food additives, and would quite often cheat by indulging in a baked treat. I justified this as my symptoms seemed to have improved so what harm could a little bit of gluten now and then have? The longer I was on the diet then more I was growing skeptical as to whether I really had a problem with gluten at all. As I never had instant reactions when I did eat gluten it was hard to believe I had a problem with it at all. Also the thought of forever going without delicious croissants, the odd beer and creamy porridge was deeply depressing, and it was always very difficult having to explain to people what it was I could and couldn’t eat. So I started eating gluten again in 2008 and it was amazing!
However 6 months after eating it again I noticed I was suffering from bloating, diarrhoea and many other random inconsistent symptoms. I realised that there maybe was something to this whole gluten free thing so started to do some research and came across coeliac disease. As soon as I read about it, I went to my GP to discuss the possibility of having it. She took a blood test and the results indicated to her that I was most definitely coeliac. However, I needed to be sure and the promise of subsidy on gluten free food was incentive enough. She referred me to a gastroenterologist so I could get an endoscopy. As I was already eating gluten at the time, I was booked in for the test quickly and after two weeks I got the results.
In some ways being diagnosed with coeliac disease wasn’t a huge surprise but the reality of what it meant was definitely frightening. I had been doing a lot of research into coeliac disease and had learnt about the risks and dangers of continuing to eat it on your health. I had also become aware of the dietary risks of being on a gluten free diet, as the diet is low in whole grains there is a serious risk of not getting enough fibre. So I became a gluten free guru. I guess I accepted the fact that this was never going away, there was no cure and I was the only one who could help me. I read everything out there on coeliac disease, downloaded every phone app and visited every gluten free food store in town. I decided that I had to embrace coeliac disease like I was a member of a special club. I would get ridiculously excited when I discovered a new bread or cafe that stocked something gluten free and delicious, and even more excited when I met another coeliac!
I had a second endoscopy last year to check and see if my small bowel had recovered and unfortunately there was still a small amount of damage, which meant that somehow I was still eating gluten. I was baffled, I had been so careful how could this have happened? I scoured our pantry, checked labels and found nothing. I began to realise that what was the most likely cause was eating out. With all my knowledge and gusto I still felt embarrassed asking questions of cafe staff and in restaurants of what exactly was in the food. I would take a waitresses shaky “yeah I think that’s gluten free” as a certain. I knew this was probably where the problem was. One good side of the gluten free diet being hugely popular is that there is a lot of gluten free food out there now. However, I do question whether people really understand the extent to which gluten is in various foods for example mayonnaise, stock and even some powdered spices. I was sure some cafes wouldn’t even know to check these things. I don’t have a solution to this. I now pick my cafes carefully and am now not afraid to give them the third degree when they advertise their Florentines as gluten free when they are blatantly made with Skippy’s Cornflakes. I make sure every film or TV set I go on knows exactly what I can and can’t have and the seriousness of my disease – IT’S NOT JUST A DIET!
We all have a role to play in making our lives easier and healthier. I still occasionally slip up, it’s hard not too but it’s definitely becoming less common. I appreciate what having coeliac disease has taught me about my diet and health, and most certainly feel a lot better for it!"