It’s hard to believe that it has been exactly 5 years since my diagnosis with Celiac Disease. It took so long for me to get a name for what was wrong with me. It was with a combination of sadness but also intense relief at knowing that yes there was actually something wrong with me. My years of struggling with this illness that had no explanation, was real!
I had got so used to being sick! Isn’t that a scary thought? But when you live with chronic disease, that is what so often happens. I got used to always having stomach problems, always having ‘gastro bugs’, always having headaches, body aches and pains, weird reactions to things, heightened sensitivities, anxiety, depression, extreme fatigue, constant low iron, constant low grade nausea and constant acid reflux. I think I had started to believe it was actually just a part of my personality. I believed it was who I was, or who I was destined to always be.
Thanks to a new GP, who wasn’t happy with my very low thyroid function and virtually non-existent iron levels, she decided to send me to a Haematologist. She was the first doctor in 20 years, who decided to test me for the anti-bodies to Gliadin (gluten). I had been to every specialist under the sun, but they NEVER thought to check for Celiac, even though I fitted EVERY symptom on the list!!
My tests came back positive. I had very high levels of anti bodies. I was booked in for an endoscope the next day. The biopsy showed clear Celiac disease in my duodenum. I was told to follow a gluten free diet for life and was sent on my way….
Five years down the line I know so much more. I know that I need to be Paleo, ie completely grain free, legume, pulses and dairy free as they all cross react with gluten (my body can’t tell the difference between them and gluten so react the same way).
I also know there is no cure and that to heal from Auto Immune disease is DAILY work! Just eating well is not enough. I need to get enough sleep, control my stress, make sure I get enough nutrients, exercise and know that at times things might not always go according to plan, as this way of living is a way of managing a disease.
One of the things I have discovered in all this time, is the common thread running through most people’s diagnosis stories: the LENGTH of time it took to get a diagnosis. On average at least 10 years!!! If I can do anything out there it’s to make more people aware of this disease so they can get a diagnosis sooner and get well ASAP!
I started this blog 5 years ago, soon after I was diagnosed as there was so little information out there and there was so little knowledge and awareness in South Africa. Now virtually everybody knows what gluten free is, back then I got a lot of “WHAT?” “HUH’S”??
I’ve shared recipes and restaurant locations that serve gluten free food and I have loved hearing from people telling me their own discoveries and from overseas visitors requesting help with where to source local gluten free food. I have also enjoyed meeting with people who have Celiac who contact me via the blog and are so excited to find someone else who knows exactly what he or she are going through. It’s our own support group, so please feel free to share this page and join my Facebook page too. Let’s keep sharing and keep each other supported on our health journey!