Off the Radar & Off the Scale: My so-called Coeliac life continued

I hope to continue the story of my so-called coeliac life with this entry; starting with the moment everything changed. The period where I fell off the radar where medical professionals were concerned, and the everyday adjustments to be made in life, felt positively off the scale.

The liquid diet - synonymous with university life, and the slightly easier option in coeliac life

So, I was now a coeliac. On discharge from hospital, I was left with a referral to dietetics, some advice for my GP, and copious leaflets about prescription bread. Trying to be proactive and gain control over what I had been told only moments ago, I quickly Googled the diagnosis. To my horror but certainly not surprise, I found umpteen stories of the most extreme symptoms and associated diagnoses; leaving me believing that my bones would completely crumble, I may not have a family, and no-one would ever want to hang out with me. Choosing the eatery let alone the menu on any social level was considered an absolute nightmare for anyone involved, and if I didn't suffer for the rest of my days with crippling symptoms, cancer of the bowel would consume me anyway. One particular publication that stands out in my mind was commissioned by a coeliac charity and illustrated a teenage girl's terrible time attempting to kiss her boyfriend. "Cross-contamination" was the cause, and close personal contact with crumbs could lead to a lifetime of loneliness according to this dramatic account. I now smile in a bemused manner when I picture THAT article, but at the time, as a 17 year old about to embark on a university degree away from home, I was a little daunted to say the least.

Next came the trip to the gluten free road show in Manchester, where I anticipated wholesome reassurances about my new-fangled diet, alongside opportunities to talk to real-life coeliacs; who would ooze with optimism and confirmation that I would feel so much better, very soon.

Unfortunately the main flavour of the day was 'bland', the majority of companies that showcased their products were only available on prescription, and the scope of food only stretched to bread, pasta and crackers. Everything had a distinct flavour of nothingness and a consistency akin to a beer mat. The audience in the main, were of allergy status in later life, and whilst I very much respect my elders and understand an allergy can be just as unpleasant as an intolerance, I struggled to relate to their situations; as they did to mine.

Once home, it made sense to try out the prescription bread option, and back then, the vacuum packed, pasty white rolls that required at least 20 minutes in the oven before consumption also required a gallon of water with each mouthful. University was due to start in a matter of months and the prospect of spending £5 on anything 'free from' from the supermarket was becoming less viable by the second. Truth is, back in the early 2000s there were very few options for replacing the options you were now told to avoid, and the products on the market were pretty poor.

The dietetics review came and went, where I distinctively recall being asked about the amount of milk in my diet. Being female and coeliac, the risk of osteoporosis was again mentioned. Nutritionally, the dietician had no concerns to raise with me, as my minimum one pint a day of semi-skimmed was considered more than adequate. I therefore sent on my way with the familiar "eat a balanced plate, everything in moderation", with the expectation that I would put on weight. I had read this time and time again in coeliac material and the subject concerned me. Compared to the weight loss then weight gain surrounding pre and post diagnosis, my body had done the exact opposite. As my symptoms had worsened in the months leading to endoscopic investigations, I had gained weight. Coupled with the fact I was now one of those "fussy eaters," my self-esteem couldn't warrant worrying about more extra pounds.

15 years later I discovered that I should have been attending annual dietician reviews, after my new GP in Sheffield announced a call to clinic. Until then, I was very much falling through the proverbial net, and went about the next decade riding the gluten free train solo. Don't feel too sorry for me at this point, as I can certainly vouch for a very supportive family, friends and partner at the time. Visiting home was particularly interesting for the next three years, as my parents had not been provided with adequate embedding time with my diet before I moved away. My partner encouraged me to take things seriously, and my university friends were confused by it all. I just wanted to fit in. I felt slightly confident after my one and only dietician review and the unveiling of my slight dairy-based addiction. I returned for a second endoscopy some months later, and the footage showed a "generalised improvement" all things considered, but I knew I still had a long way to go. I didn't feel 'well' by any stretch of the imagination.

One night I became very complacent. I cooked a Bolognese, and as half an oven-baked garlic bread lay on a baking tray untouched, my craving was realised. My guests were full, so I slipped in a slice and settled to watch a film hoping I wouldn't feel a thing. 30 minutes later signified the start of 3 days of thorough illness. Through the bouts of stomach cramps, diarrhoea, migraines, rashes and fatigue, I realised I had messed up. I did need to make some serious changes, and I needed to take control. University became more of a right of passage that I had ever imagined, and I am grateful for it.

If you are unsure about whether you may have a gluten allergy or intolerance, do speak to your GP and ask for a blood test.

Coeliaclass x

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