I’ve been gluten free since I was 17. I’m now 21. I remember the grogginess, the brain fog, the constant lethargy and feeling sick and not knowing why. It took the doctors months to conclude what was wrong.
At first I was diagnosed with anaemia and put on iron tablets but I still felt the same. I didn’t understand. I went back to the doctors , more tests were run where they concluded I might be intolerant to gluten. I was put on a gluten free diet in the mean time. Gluten – what the hell is that? And it wasn’t until I went home that day and emptied the contents of my cupboard that I realised how much I couldn’t now have. It felt surreal. I was angry, confused and upset.
After sitting on the floor amongst all the food that was now off limit to me, my mum came back home after doing a big food shop. She’d come back with all gluten free goodies including bread, cakes, biscuits, everything. Trying to show me I didn’t have to miss out but I still felt discouraged.
Over the summer I was told I had to go for a gut biopsy to ensure I had the disease and was told after months of eating gluten free that I would now have to eat gluten again. So that day I went out for lunch and ordered a burrito and god did that put me off burritos. I was violently sick when I came home a few hours after and felt exhausted from being sick so much. This continued all week, the constant lethargy, feeling nauseous and run down.
Eventually the test results came back and it was concluded I had coeliac disease. From then on I had to have a gluten free diet. I was eating completely gluten free and somehow I still felt like this frail exhausted being. I’d lost a lot of weight from being so ill and was very pale.
It was after a year that I finally started to feel better and adjusted to my new lifestyle. I started to feel less tired and more alive and not only that , it made me aware. Suddenly I had to be aware of what I was eating , what was going into my body. As a coeliac obviously I have to avoid gluten (wheat, barley, rye) ,but I’m also more prone to deficiencies such as iron deficiency and vitamin deficiencies. So I had to change my diet, I realised the importance of what I was eating , for my health and my mind.
It’s still difficult now all these years later and I still trip up. I have to suffer through awkward encounters of rejecting food at events and explaining my condition. Elaborating on why yes one beer will make me sick and the constant misunderstanding around it given it’s always seen as a fad diet.
An incident at the University Union last term showed this. I had ordered a gluten free burger thinking it would be fine given I had checked several times that it was gluten free. Sadly it was not. I went home and I was violently sick for two hours. I was left feeling like I couldn’t sit up cos I’d expended so much energy being sick for so long.
I then called the union, sent out tweets along with my friends as we were all angry and upset at what had happened. The extent we had gone to to make sure it was gluten free for it to not be. When I’d finally got hold of someone I met with the manager of terrace making it clear that changes needed to be made.
I explained the situation and the severity of allergies including nut, gluten and lactose allergies and that cross contamination is so essential to avoid. Having separate pans and cooking areas is just as important as the gluten free food itself. As well as this we discussed the menu itself and making sure that the gluten free options were clear and easy to identify.
Positive results came from this with the university reimbursing me, and apologising profusely for their mistake. They have now invested in new separate equipment and made necessary procedural changes to ensure the welfare of those like me with various allergies.
This is just one instance, out of many, that I and various other coeliacs have had to endure. That’s why I’m writing this – in the hope people understand for me this isn’t a choice. It is mandatory for my health and so awareness is crucial, for me and for anyone else out there with coeliac disease.
Charlotte Wood
Image: [Pixabay]