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Coeliac Community Week 2020: A week of ramblings

Updated: May 13

Day 1


So this post has already been written. It was about 5 minutes ago. It was fully finished actually. But 90 minutes of work went down the toilet (sorry, lame), thanks to a power cut and no more helpful automatic saves. I wanted to present the here and now. May 2020. 17 years of fumbling through gluten free life under my belt. One thing is clear, awareness is still lacking. Not just for everyone, but for me too.


So here goes, a slightly frustrated but much more concise version, you will probably be glad to know.


I've got this


It's been a strange few weeks, stranger than many of us have ever known, perhaps. I thought I was handling things really well. Work has been busy, my routine hasn't altered all that much. I am missing those nearest and dearest terribly, thanks to being an overly-tactile and some would argue, needy individual. All-in-all, Covid-19 didn't feel too evil in the grand scheme of things.


I've never been great at maths, and my physical activity over the last seven weeks has certainly not outweighed the calories I've consumed. I have had some minor power over what passes my lips, however. The risk of gluten-related poisoning has reduced massively given that most of my food is produced in my own house. I'm no Master Chef, but silver linings and all that.


I don't feel so good


For the first three weeks of lockdown things were tough, physically. I was crippled with the familiar 'pregnancy belly' swelling that usually occurred every few weeks. It was happening every day, and brought with it the joyous symptoms that may be familiar to many a coeliac. Audacious wind that makes your eyes water, sudden panic-stricken trips to the loo at the most inconvene moments, and the polar opposite for a days at a time; leaving you just about good enough for a stint on the sofa. No wonder I'm so irresistible (my other half is a true gem).


I am not a frequenter of the GP surgery. Anyone who has had read my previous posts will know the almost laughable experiences I have had in the past with my tenacious guts and various medical professionals. However, I have found a great doctor. She was happy to chat through my toilet woes without a flinch, (I can't be wholly sure about this with a phone consultation of course). After joking about me taking a pregnancy test, she agreed to instigate some tests. Amongst this, however, she struck me with her quietly confident explanation of a sole cause. Irritable Bowel Syndrome (IBS). I am very familiar with this term. Despite years of research into it after it was placed on my medical record over a decade ago, it remains somewhat of an unknown quantity to me. To many I have spoken to about their own IBS stamp, it feels often like a throwaway term used to describe a group of generalised symptoms that doesn't lessen the burden for the sufferer.


But it's only diet, right?


My GP attributed stress to the resurgence of chronic symptoms for me, and it got me thinking. I stopped trying to fully assess whether I was stressed or not, and focused instead on the stress 'busters' I knew and loved. Like any other long term condition, managing the primary issue and any associated issues, depends a lot on lifestyle. Your routines, your self-care, your self-acceptance, your balance. Coeliac disease isn't something that can be managed by never eating gluten ever again. It is also not a stand alone enemy. For me, there are many other physical and mental associations thanks to it, and I have only just started to acknowledge them in the last few years. I am going to mention more of these over the course of this week. In relation to the here and now, I am pleased to say that after making some positive changes to my lifestyle over the last four weeks, my very attractive bodily functions have somewhat settled again.


For anyone with a long term condition, I salute you. If you're like me, you may get a bit too cocky every now and again, thinking you've cracked it, until another curve ball comes and makes you question everything you've done for the last lifetime.


Trust your body. Only you have the power to feel better. Listening to what it is telling you through symptoms and experiences is important; not puzzling over the reasons why - some of which you will probably never figure out.


If there is one thing I hope to raise awareness of in relation to this often simplified illness - it's that it's not simple at all. It's actually quite complicated. Stay safe everyone, and remember to listen to you, you never know what you might discover.


Thanks for reading,


Coeliaclass x


The last week in lockdown:




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