queen of faff

Former secret writer. This is my rehab.

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Grieving for gluten

Shortly after my thirtieth birthday, I was diagnosed with coeliac disease. The diagnosis came as a shock to me. I hadn’t realised I was unwell, and only found out I had it as the antibodies showed up in a blood test I was having for something I thought was completely unrelated – itchy skin.

The diagnosis threw my world as I knew it into complete disarray. I called my husband from the hospital in tears when I was told I had two positive antibodies and would need a biopsy of my intestines to confirm. His response was comforting: “Can you still have wine? You’ll be fine”! I had a biopsy a few weeks later and by 23 July 2010 I had gone gluten free. For life.

Coeliac disease is an auto immune disease. There is no cure. The only treatment is to cut out gluten completely from your diet. Completely. It’s not like going on a weight loss diet and sneaking a piece of chocolate now and again. Cheating isn’t really an option. One crumb can cause damage to the intestines as it is the body’s reaction to gluten that causes the damage, rather than gluten itself.

It is safe to say that the concept of ‘never again’ was a really hard one for me to come to terms with. It didn’t apply to any other area of my life, and never had. It felt like all my favourite foods contained gluten, pizza being top of the list.

I had no idea what coeliac disease was. I had no idea what gluten was really. And when I discovered how many things contain it, I really spiralled downwards. As melodramatic as it sounds, I began to grieve.

First came denial. “I don’t have any of the usual symptoms”. “There must have been a mistake”. “I really think they could have mixed my results up with someone else’s”. When you see a photo of your own intestines you realise the latter isn’t really likely.

Next came anger – the whole ‘why me?’ phase. It has a genetic connection and I was desperate to understand why I was the only one in my family who has it. Not because I would have wished it on them – far from it – but because I felt I needed to make sense of it.

The anger was followed by a really long period of self pity and, on reflection, depression. I looked longingly at other people’s food and just wanted it. Even finding myself wanting to eat things I would never usually have eaten before just because now I couldn’t have them.

People’s well intentioned comments about how it could be worse only fuelled my anger. I was well aware it could be worse, and that just made me feel guilty for feeling as low as I did and berate myself for not snapping out of it. 

Eventually I moved to a state of acceptance – sprinkled with the odd day where I still really mind. There are several things that helped get me there:

Coeliac UK. They are a charity for people with the disease and were an absolute lifeline, providing advice, support and an essential food and drink directory which lists products that are safe for me to eat. I joined my local support group and met other people who shared tips on eating out in my local area, which type of bread was the best, which shops sold which products and so on. http://www.coeliac.org.uk

My husband. He constantly allowed me to feel how I was feeling without putting any pressure on me to cheer up or get on with things faster than I felt able to. He also cooked and made sure I ate when my relationship with food deteriorated.

My family and friends. There is something so reassuring about having awesome friends who, when you are going for dinner call you up that afternoon to check whether an ingredient is ok for you. Then when you get to their house they announce “this is the gluten free side of the kitchen”. Or knowing your mum’s gravy always did contain cornflour instead of wheat flour so will taste the way it always did. Or having a friend who turns up on your doorstep with a paper bag from a Chinese takeaway and instead of it containing gluten-full takeaway, contains home-made gluten free dishes in a foil tray with a cardboard lid so that you can feel like you’re having a takeaway too!

Time. As much of a cliché as that may sound, as time went by, things really did start to get easier. I got familiar with what foods I could eat, what restaurants could cater for me, and tried to remember to take snacks with me when going out, as it’s the eating on the run that I find the most inconvenient aspect of being a coeliac. The work of Coeliac UK is invaluable in raising awareness and more products are arriving in the supermarket and more restaurants are providing gluten free options.

I still sometimes mourn how simple things were before, how I could eat whatever and wherever I wanted. But I know that my condition could have come with many more complications, such as dairy intolerance or diabetes, and therefore I have it easy compared to others.

So now I am working on opening up my horizons again, and dream of travelling abroad and being able to cope with being gluten free in countries where I don’t speak the language. Coeliac UK provides language translation sheets for that very purpose, so I know that what is holding me back is me.

I’ll get there. I hope those days where I still mind will become fewer and fewer. And when I go back to Rome I’ll come to terms with eating a salad outside the Coliseum instead of my beloved pizza!