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Coeliac Awareness Week 2018: Looking back to 2002


Its May 14th 2018, and so begins 5 days of marketing, promotion and social media exchanges on the subject of everything gluten free. It is the week I have decided to launch my blog, and it happens to coincide with mental health awareness week. The latter is a subject I back hugely, given personal experience and my career caring for those with lived experience. The former is something I continue to instil; I haven't yet mastered it, but I have come a long way. For me, the two are intrinsically connected.

These national awareness events highlighting all things health got me thinking of the journey I took in order to regain control over my body and mind; starting 32 years ago. Many dismiss going gluten free as a fad, a phase; a fussy inconvenience for willing hosts and proprietors in the food industry alike. I see it very differently, as do many other coeliacs I have met. We continue to weather the apparent scepticism, and question the concerning responses we get when we enter an establishment and they've "never heard of 'gluten'". Through this post, I want to give a summary of my experience from illness to almost wellness in an attempt to end the general sense of confusion and criticism with gluten. Moreover, this is for anyone who is experiencing a similar process right now, or they know someone who may be struggling with symptoms they can't quite pin down.

I was a pretty content baby all things considered. I especially loved my food, and didn't require much attention; unlike my very demanding and much cuter brother. The only time things were a "little difficult" according to my parents, was the regular event of my stomach gargling and lurching in stereo, the administration of colic medicine, and the eventual screaming and crying as a result of what must have been pain. Following this, unruly constipation that could last for days and a stomach that immediately swelled beyond what you would determine bloating. This situation escalated to such an extent that at 18 months old, I ended up in A&E. The NHS staff that assessed me simply deducted that I wasn't drinking enough or eating enough fibre, and so continued years of attempting to master a fibrous diet, and drink at least 7 glasses of water per day; whilst battling through the many gripes and pains I had become quite accustomed to. My gut would swell to the size of a football and I would require I very good nap after the worst of it was over; with headache and furiously itchy skin to bargain with.

Fast forward to my teenage years, and I contracted the most horrendous stomach bug I can remember. The virus lasted for nearly 4 weeks, and I was completely unable to eat. The latter two weeks involved further symptoms on a lesser scale, and I lost 2.5 stone; having been 7.5 stone to start with. Following this, the symptoms that had previously featured intensified considerably, and I went to see my GP. Twice.

Visit one, I quote: "You teenage girls live off one diet coke a day, and you think that's eating a balanced diet. Go have some proper meals and you'll be fine". I head home sheepishly, rather confused.

Visit two: "Oh it'll just be your periods, they do that sometimes, period pains". I head home again, frightfully confused and determined to get a proverbial grip. 

Humiliated and but slightly humoured by the audacity of this medical professional's responses, I sought a second opinion a few weeks later. Luckily this individual was hot on the subjects of allergies and intolerances; immediately summoning me for two blood tests and a gastroenterology appointment at a local hospital. Both blood tests returned with positive results for coeliac disease, and as I gulped a camera down my oesophagus after some banana throat spray, I hoped it was nothing more sinister. I was not allowed to view my insides, despite being weirdly keen to, however, the specialist consultant confirmed my bowels demonstrated 17 years of gluten-related damage, and they were no longer able to digest food normally. A dietetic appointment one week later explored my likely deficiencies; due to unwillingly poisoning myself for over a decade. I was told cutting gluten out completely and sticking to the alternatives in my already balanced diet would be "just fine" for my recovery.

I felt incredibly lucky to discover my issues were not related to anything more life-threatening; the fact I wouldn't require anaphylactic intervention in order to survive a contamination like some of my nut-allergy suffering friends. However, this is the day everything changed. I was told in no uncertain terms that if I did not banish this seemingly insignificant protein matter found in wheat, oats, rye and barley, I may well be dealing with something much more lethal in years to come. More damage could be done said the experts, leading to possible tumours, infertility and more. This is quite daunting to hear at the age of 17, but I was lucky, and had a chance to make positive lifestyle changes, and only I could do it. 

6 months later, a second endoscopy occurred to see if there had been any benefit with the change of diet and my damaged insides. This time my intestines didn't look so horizontal, inflamed or impenetrable. They looked more wiggly, absorbent, and inviting to much-needed nutrients; almost like a normal person's. Almost like they should. Unbeknown to me, I subsequently fell off the radar with any further input; more of which I will explain in a future post. 

For now, that was the start of my so-called gluten free life....

Coeliaclass x 


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