I Can't Eat What?!?
Updated: Nov 30, 2018
I was diagnosed with coeliac disease in my mid-thirties, drastically reducing my menu choices overnight but instilling a determination that it should never reduce my life choices! This is my story of my path to diagnosis. For fellow coeliacs, gluten intolerants, others questioning whether they might fall into these categories or just want a better understanding of how it all works, read on! For those more interested in the adventure and travel side of this blog, stay tuned...I've got you covered :)
Retrospect is such a luxury. I remember as a kid never really liking sandwiches, apart from the fact they were often squishy by lunchtime they just never made me feel good. I hated cereal, except for Frosties that were so laced with sugar that the sugar high overrode anything else going on in my body! Cereal and bread just always made me feel “heavy”. Mum always tells the story of how all I ever wanted was water – litres of it – all the time – even when I was 4 and at a birthday party with soft drinks galore on offer. Weird kid. Your body knows what it wants and for me it was flushing out the toxins I was unknowingly ingesting every day. My gluten ways were never enough for me to be really sick though and I was a happy, healthy child with a good balanced diet.
Fast forward to adulthood and the volume of those body signals gets turned down by life, days get busier and it’s all about adventure and convenience. By my mid-20’s I knew I was unwell, I felt nauseous 90% of the time, my digestion wasn’t ok, I had skin rashes, constant migraines, fatigue and I just knew this wasn’t how things were meant to be. After skin-prick tests for allergies, blood tests for infections and all sorts of other things (nothing to do with coeliac disease mind you) my regular GP diagnosed “stress” ie. he had no idea so he just used the catch-all diagnosis to save his butt. Keep in mind this was back in the late 90s/early 2000s where coeliac disease probably wasn’t at the front of people’s minds, I’ll give him that. So, I went down the naturopathic route and after lots of uncomfortable discussions about bodily functions I was diagnosed lactose intolerant. Hurrah! I had something I could “fix”. I diligently cut lactose out of my diet and I felt significantly better. I’d solved the puzzle! Or at least I thought….
Fast forward another 10 years, we’re now in the early 20teens, and the nausea, migraines and skin rashes were back. I felt sick and bloated every time I ate even though I was eating what I thought was a healthy, balanced diet. It was so frustrating!! A move to Melbourne had me re-evaluating every facet of my life and inspired a real desire to change things for the better and live the best life I could. This also meant getting truly healthy. So after a bit of searching I found a holistic GP who was willing to be as thorough as needed to get this all sorted out.
We did all sorts of tests on vitamin and mineral levels, blood counts and the like, we modified my diet even more, we did stress tests but finally she ordered a genetic blood test which showed 3 genetic markers (two HLA DQ2 markers and one HLA DQ8) for coeliac disease. This was enough for my doctor to diagnose coeliac disease and prescribe a lifelong gluten free diet as treatment. She also said that with those kinds of results both my parents were likely to be coeliac as well.
At the moment, a coeliac diagnosis is only considered definitive if the patient ingests a bucketload of gluten for 6 straight weeks, somehow stays sane and alive, and goes through a endoscopy so they can take a biopsy of the part of the bowel they think most likely to be suffering damage. I wasn’t, and am still not, up for putting myself through that and am looking forward to the day that less invasive tests are in practice.
So here I was, mid-thirties given strict instructions to cut all gluten out of my life. Now I wasn’t a huge gluten ingester anyway (hence why I wasn’t prepared to eat the amount of gluten required for the biopsy test) so I thought it wouldn’t be that hard surely!? Yeh, not so much, gluten is a sneaky fiend that winds its way into pretty much everything you lay your hands on….even Vegemite! I remember going out with friends for dinner only weeks after the diagnosis and as soon as the menu came out I instantly bristled and all I could see were all the things I could no longer eat…EVER. This went on for a couple of months until I got tired of being angry and I put all my energy into finding better alternatives for all those “convenience” things I used to wrap my life around.
The good news was after 6 months of no gluten my gut had healed enough that cheese was back on the menu! Yay for silver linings. I certainly didn’t feel better overnight switching to a gluten free diet, it has taken quite a few years of ups and downs to feel that I’m now in a place of better wellness. I still get ridiculously over-excited by GF cakes, doughnuts or versions of things I thought I’d never be able to eat again, but as with anything it’s all about moderation. I could possibly eat my body weight in GF croissants and pastries when we’re in Paris later this year but hey, we’ll be on holidays!
This blog is my way of sharing my experiences, the stuff I have found, the mistakes I’ve made (and continue to), the lifestyle changes I’ve needed to make (and the ones I refuse to make so am finding alternatives for), and most importantly the adventures that still await. I hope my musings can be useful for you and I’m glad you’re here to share the ride!
If you’re after more information on coeliac disease, gluten sensitivity and following a gluten free diet the Coeliac Society of Australia is a great source: http://www.coeliac.org.au
If you as excited as I am about GF Patisseries in Paris check this out (https://bonjourparis.com/food-and-drink/guide-best-100-gluten-free-pastries-paris/) and stay tuned for our European adventures later in 2018!