For Coeliac Awareness Week, I’ve decided to share my story of diagnosis and my road to discovery of being coeilac. I have to say, I really hate the word disease and I don’t think of myself as living with a disease. I’m happy and healthy with a generally positive attitude. I think I’ll struggle in part to share some detail, but I will do so anyway, in the hope that if anyone feels resonance with what I say and it provides comfort knowing they aren’t alone, that’s a positive outcome.
I’ve been thinking of this post for a few days since a twitter chat with the lovely Gluten Free Photographer and I suggested that some bloggers should share their story of diagnosis. This was also done last year, but I didn’t contribute as I only started my blog in the past couple of months.
This is a good starting point for me – Gluten Dude is a US based blog and also worth a read. He created this really helpful image.
I didn’t realise I was coeliac for almost the first 30 years of my life. I guess this isn’t unusual as many GPs weren’t aware of Coeliac Disease back in the 1970s and 1980s. However, looking back, I displayed many symptoms that when considered together, actually scream: ‘STEP AWAY FROM THE GLUTEN!’ I remember having constant mouth ulcers, canker sores, poor teeth enamel with consequent fillings. I also remember a lot of stomach pain, vomiting at times, nausea and plenty of diarrhoea. I guess one of the big things for me was the late onset of puberty. While this isn’t in the above diagram, it is another symptom of being coeliac. I didn’t hit puberty until I was 17 which in itself caused other issues of low self esteem and feeling different and isolated from my peers in school.
After a happy few years in Uni where I consumed enough gluten on the obligatory student diet of pasta, toasties and the odd beer, I sailed through those years with no obvious impact on my body. After a couple of years in work, I undertook a part time post-grad course while still working full time. To say this was a stressful and busy time is an understatement. I thought that it was the stress was causing my health issues. It reached crisis point when I could no longer hold any food or nutrients. I was experiencing diarrhoea up to fifteen times per day and even though I had rapid weight loss, my tummy was always bloated. I’d been put on stomach ulcer medication which didn’t help and then three courses of antibiotics for the gut rot. I was then put on a very restrictive diet where I had to cut out caffeine, yeast, gluten, starch and live on a small number of very limited plain foods. It was here that I started to heal again and feel back to my old self. As I had a six week holiday to Australia planned, I remained on a gluten free diet as I noticed repercussions when I ate it. Let’s face it, who wants to be sick when on a holiday of a lifetime? This meant that there was to be a four month gap between me last consuming gluten and getting a scope test in the hospital. I had never been told that to test for coeliac, you still need gluten in your diet. I couldn’t have kept eating gluten, physically I’d become skeletal and ill. So, my result came back negative. I’m not alone in this occurrence and many coeliacs are still not aware that they need to consume gluten until they are tested and indeed many have become so ill the mere thoughts of this is too much while waiting possible months for a scope test.
One of the biggest realisations for me on seeing the above chart, was the female specific area as I’d gone through many of the symptoms. Unfortunately, on my first pregnancy I had an early stage miscarriage. I have since had two sons but on my second son, I was threatening miscarriage and had a long two week wait to see that little heart beat. I didn’t know until last week about the connection between coeliacs and miscarriages. That’s not to say that because I’m coeliac, I had a miscarriage. Not enough is known about either to comment. I do know that I’m really blessed and grateful for two happy, healthy little men. I guess it struck a chord seeing it on the chart as one of the most often mentioned symptoms in the test group.
During the course of the next few years I also realised that I couldn’t eat gluten free oats. A few years ago I had a lot of pain, nausea and bloating again. My GP sent me for a gall bladder scan as it was thought that I had gall stones, the pain was so bad. I had a scan and was told my gall bladder was fine. That in itself was good news but no answer to the pain. I cut out gluten free oats for breakfast and again, my health was restored. I get an immediate severe reaction if I eat any gluten free oats now.
I don’t want my coeliac journey to be considered a tale of woe. Yes, there have been obstacles along the way. On the whole, I’m a really positive person. At the moment I have my health. I eat extremely well as I eat very little processed food. I cook from scratch and I’m becoming better all the time at that. I’ve discovered a real passion for good food and we’re blessed in Ireland to have access to so many wonderful products both naturally gluten free and artisan produced gluten free foods. I don’t think of myself as having a disease and I am certainly not defined by being coeliac. It’s part of who I am. I hit the gym three to four times per week and in the past six months I’ve started interval training. I’m fitter now than a decade ago.
I’m the only coeliac in my house, so far. I’ve had to get one of my sons tested as he started displaying some symptoms. His test was negative, but I’ll be on the lookout for further signs. I guess my husband might as well be coeliac as he lives like one at home as all the food that I cook for dinners are naturally gluten free. It became difficult for us to find venues to eat out in and that’s why I started my directory of gluten free restaurants and food venues in Ireland. I don’t think that as a coeliac you should miss out on these experiences and he was missing out as well. That was my motivation to start http://www.coeliacpages.ie There are new and exciting times on the horizon for coeliacpages. I really just want to make life as a coeliac as straightforward as possible for all.
Thanks for reading my post for #coeliacawarenessweek