My journey with Celiac disease

For as long as I can remember (which frankly…. Who knows how great my memory is), I’ve had bowel problems. Many doctors just said ‘it’s IBS’.  Which I believe doctors use that diagnosis too quickly without properly investigating.

Back in 2005, I got tested for Celiacs disease. The results came back and the doctor told me they were negative and forwarded me onto a specialist, who after performing a colonoscopy/gastroscopy on me, also said I was negative and told me to eat muesli and I would be fine.  So fast forward 7 years. I am exhausted as I have ever been with my gastro symptoms equally as worse. MY friends and family are sick of hearing I am sick, sick with recurrent sinus infections, ear infections, digestive problems, moderate fatigue and exhaustion, loss of motivation, depression. I felt like a hypochondriac and I’m pretty certain I sounded like one. I demand to be tested again with a different doctor. Heaven forbid I was STRONGLY positive on all Celiacs blood testing and right next to my current blood test results were the results from my 2005 testing. Which to my horror said ‘POSITIVE’…. So here I am I have been a celiac for a minimum of 7 years without knowing, but probably much much longer. And with this delay in diagnosis, I have other issues resulted to the Celiacs disease. I now have severe allergies and B-12 deficiency, All connected to the Celiacs disease, of which had I known about my Celiac diagnosis 7 years ago, could possibly have avoided.

So where am I now? I have been gluten free for about 2 months, honestly, I have not noticed any changes yet, but it will take a while to see any changes. I am also battling with trying to be treated appropriately for Vitamin B-12 Deficiency, which the doctor told me to eat a jar of vegemite to fix it…….. when I responded saying ‘I can’t it has gluten it’, he responded with an ‘oh well’…. little did I know at that stage Vitamin B-12 deficiency was a scary thing, and very dangerous. (read about it on my B-12 Deficiency page It can cause dementia and neurological problems amongst other things.

So right now, I am still attempting to get used to the gluten free lifestyle. Admittedly the hardest part is eating out and socializing. It’s a lot harder now, but I’m trying to learn how to navigate through it, and take note of the cafes and restaurants that know about gluten and offer a range of gluten free options.  The next hardest part is BREAD. Gluten free bread will NEVER be the same as gluten filled bread. Sad but true.

So as I notice improvements on my gluten free diet, I will let you know and I will update and improve this blog site with recommendations and resources to help other Celiac’s out there.

Moral of my story? ALWAYS get a copy of your blood result tests, ALWAYS question your doctors, ALWAYS do your own research by googling. If unhappy with one doctor’s response, get a second opinion. This is YOUR health, YOUR life, YOUR wellbeing, trust me, and don’t mess with it.

(by the way, apologies for typos or grammar….this post is written in a rush!)