and a very warm welcome to Thank Heaven’s – the Gluten Free Lifesaver!
My “first” day as a coeliac was also the last day of my life as I had come to know it. I went from worldly and wise to lost and lonely within minutes of getting the diagnosis. Happy of course, to finally have a diagnosis and fit into a box, but quickly realizing how many holes were in that box.
I had known myself to be a capable individual with a decent enough accumulation of experience to get me by. Suddenly I was much like a baby, learning about the world all over again. Rediscovering my body and its antics, my likes and dislikes, and all the while facing people around me with getting to know a new version of me. At least that’s how it felt. I knew next to nothing of the road ahead, and the more I learnt the more I realized I didn’t know – if that makes any sense. It shouldn’t be like that. Just because coeliacs disease isn’t a cash cow for the pharmaceutical industry (yet), doesn’t mean that hundreds of thousands of people should be left to fend for themselves in the midst of half-truths and general incompetence. I found that if I scrape this issue to the very bone, I am left with three steadily reoccurring frustrations that kept throwing me off my path:
- I didn’t know who to trust
- The people I should be able to trust didn’t have all the information
- The necessary information wasn’t readily available to either of us
Recovery was the blind leading the blind. All trial and error, and in coeliacs disease every error is painful and disappointing. Thank heaven’s for all the individuals out there on the world-wide-web who fight for every inch of information, test it (often to their own detriment), then share their valuable knowledge with the newbies. I have a lot of time for them.
Coeliacs disease should come with a user guide. The diagnosis came delivered to my doorstep much like an Ikea flatpack. My life was all bits and pieces, all screws loose and lots of little packets to be opened. No tools, no manual, no handyman to show me the works. Just me, and an empty room waiting for a new piece of furniture.
I can’t give you the manual and I’m sorry about that. But I can be your handyman. Because I have got that chest of drawers up and working pretty good now, and I made most of the mistakes myself in the process. I don’t know everything that works, but I sure know a lot that doesn’t. And that’s a start. Hopefully a slightly better one than what you might face without me.
I am better now. Everything is a lot better. And I am very grateful to everyone who contributed to the recovery of my body and my life. I hope I can contribute too.
Lots of love from Kristine