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Living With Coeliac Disease
Written by Caleigh Gnana-Pragasam. Monday, January 9th, 2012
I was diagnosed with Crohn’s Disease when I was 13 after months of pain, diarrhoea, vomiting, and extreme weight loss. I lived fairly symptom free for most of my teenage years until, at 19, a consultant decided I was doing so well I should come off my medication. I have had active Crohn’s for the 11 years since.
In 2006, I had surgery to remove a damaged part of intestine. I was living in extreme pain, unable to eat, and quickly becoming weak and skeletal. The surgery should have made me better. It didn’t. I couldn’t gain weight, I was constantly tired, always cold and in pain. Diarrhoea, bloating, and acid reflux were now part of everyday life. Finally, I couldn’t take it any more. I broke down in my GP’s office and my Gastroenterologist rushed me in to hospital for a gastroscopy, suspecting that the Crohn’s was presenting in my stomach.
No one was expecting Coeliac Disease. The test was just procedural for one of the biopsies taken. My Consultant broke the news to me and explained that the only treatment for Coeliac Disease was life-long abstinence from all foods containing gluten.
My first reaction was relief! Followed quickly by a real sense of empowerment. The past 13 years of my life had been at the mercy of doctors and surgeons, medications controlled the symptoms of my Crohn’s Disease (some more successfully than others) and all the decisions were out of my hands. Coeliac Disease was different, I was in control! I could chose to embrace this new diet, cut gluten out of my diet and I would get better.
I went home and threw out all the bread, pasta and biscuits, then I went online and found the Coeliac UK website. I threw out all my mustard, soy sauce, butter with crumbs in, brown sauce, cous cous and gravy granules. I bought new wooden spoons and chopping boards. I was determined that I would never knowingly eat gluten again.
It’s not all been plain sailing, far from it. I have walked out of restaurants when they wouldn’t cater for me, gone hungry at all-you-can-eat Chinese buffets, and burst into tears in the Free From aisle at Asda when they discontinued my favourite rice noodles! I have had a few accidental glutenings that have left me feeling horrible for days on end. I have been told that it’s all in my head, that I’m just a fussy eater or that I’m attention seeking. My husband (then Fiancé) had a hard time accepting the changes – he was concerned that it spelled the end of our social life – where would we eat?! Who would invite us for dinner now?!
Five years later, I have no regrets. My diet has become richer and more varied since I was diagnosed with Coeliac Disease – I cook homemade meals from fresh ingredients most days, I bake several times a week, I have tried quinoa, millet, red rice and buckwheat. The Coeliac community is a close-knit and incredibly supportive group of people who are always willing to share suggestions and experiences with each other. A diagnosis of Coeliac Disease, or any other gluten intolerance or sensitivity, is not the end of your journey with food – it is just the beginning!
