Joining the Coeliac Society - What a lifesaver!

So, I've been diagnosed (over the phone!), now what do I do? I have always had a keen interest in food and nutrition, but this was a curve ball I wasn't expecting! Coming from a European family (a Greek father), the thought of no bread was just ridiculous!

My GP advised me to join the Coeliac Society straight away. You can only join if you are a diagnosed Coeliac or have intolerance issues with gluten. They are a dedicated group, who hold the key to understanding how to manage this disease through a gluten free diet. They are also commited to the education of (particularly) GPs in the diagnosis of Coeliac Disease, and have a firm interest in research into it.

Well, they were a lifesaver! They sent me reading materials, an ingredient book, and most importantly, an invite to their next workshop for newly diagnosed members.

Before I got my package of information from them, I had gone to the local health food shop and spent a fortune on expensive gluten free ingredients and products. I was wondering how the hell I was going to maintain such an expensive grocery list in the long term (I was also wondering how I was going to live without bread - anyone tried the supermarket gluten free bread? Next time you're in Woolies or Coles pick up a loaf and smell it - you'll see what I mean!).

So I went along to the workshop. Phew. I was surrounded by like minded people, in the same boat as me. It felt like such a relief. They put on a gluten free lunch for us, provided us with a goodie bag of gluten free products, and they spoke. Spoke sense.

The three most important things I picked up that day were:

1) eat as much 'naturally' gluten free food as possible and;
2) eat as much low GI food as possible, and
3) you are not alone.

I met families with Coeliac kids, older people who had only just found out, opinionated people, quiet people - Coeliac's come in all shapes and sizes, and from all corners of society. That's why I believe it's important we all talk in lay mans terms about how to live with this disease. Education is key, and the Coeliac Society are doing an incredible job. Check them out at http://www.coeliacsociety.com.au/

I cannot recommend enough how important it is to join your local Coeliac Society. They are a group that needs to be supported by us all for the wonderful work they are doing. And honestly, they will make your life easier (my grocery bills are not as big as that first week anymore, thanks to some sensible food recommendations and a decent reading list!).

Getting Diagnosed - "I'm SO tired"

Getting diagnosed is a journey in itself! I hadn't even heard of Coeliac Disease when I got diagnosed, so there was no way I would have been in a position to push the GP for tests - I'm just extremely fortunate that my GP was being so thorough.

Did you know that Coeliac Disesase is the most under diagnosed disease in Australia? The stats are astounding. 1 in 100 people are affected by Coeliac Disease in this country, but less than 75% of us know that we have it. Check out http://www.coeliacsociety.com.au/

I was well, very well, prior to having my little girl Lucy. I had an extremely busy job (averaging 50 - 60 hour weeks) managing a team of 10, in a start up that was growing so fast we hardly knew how to keep up, and was running at least 4 - 5 times a week, with regular half marathons and 10kms races keeping my weekends busy. Then I found out I was pregnant....WOW! How exciting!!

The first 25 weeks of the pregnancy were horrible (sorry Lucy!) to say the least....throwing up most mornings, and chronic stomach pains....obviously I constantly feared the worst. But I got through it, and eventually felt better. On December 4th 2007 Lucy joined my husband and I. I have to say, it was the most amazing moment of my life. She was (and is) perfect.

Welcoming a new born into my world was fabulous, and extremely challenging. After my standard 6 weeks post birth check up, I went back to exercise....I joined a fab, fab group in Collaroy (northern beaches, NSW) called Step into Life, and inducted myself back into the world of sport. It all started really well....for a few months, I was energised and feeling great. But slowly, slowly over time, I stopped feeling that endorphin rush we sport junkies love. I thought "oh get over it, you've been up half the night with a small child, of course you're a bit tired" but as time went on, and Lucy slept more, I just felt that I had less and less to give. I remember at one point looking at the training and saying "I haven't got anything to give you today".

I was also craving crap food! I wanted muffins, biscuits, chocolate....you name the sweet thing, I wanted it, especially in the afternoon.

Every time I saw my GP, I'd say to her "I just don't feel right". No stomach cramps, no upset tummy, no rash, no nothing to show for it, I just felt extremely tired, and just didn't feel right. I know that sounds so cliched, but at the time, I couldn't articulate what the problem was. I just didn't feel right.

I had restless legs at night, I couldn't sleep (even though I was becoming more and more tired as time went on)....I was SO frustrated. And my hubby got to the point where he stopped asking how I was "I'm tired, just SO tired" was the standard response as I was lying on the sofa looking at Lucy wondering just when she'd go to sleep.

My GP started some blood tests. The first lot came back that my iron was a bit low (normal post birth anyway) and my thyroid a bit under active, but neither thing so bad that it would be making me feel as tired as I was. The second round of blood tests were taken, and to my surprise, she called me at 9pm about a week later. God, I was thinking, "please, please don't be ringing me to say I'm pregnant!" - I couldn't have coped. She told me my blood was showing Coeliac antibodies. I had to keep eating gluten (never, ever stop eating gluten until you've had an endoscopy - a small intestine biopsy, otherwise you might get a false negative for Coeliac Disease) and I went in for a biopsy a few weeks later.

The anesthetic was amazing! I was gutted when they woke me up, it was the best sleep I'd had in 8 months!

The following week, I was in Melbourne, at a client meeting, eating my turkish bread sandwich, and I got the call. "Zoe, you are Coeliac. You need to go onto a gluten free diet for the rest of your life". I hung up the call, finished the sandwich and got on with the meeting. That was a Thursday I think. I spent the rest of the week ordering pizza, eating pasta, getting as much bread into me as physically possible. I weighed 66kgs the week I was diagnosed. I now weigh 62kgs. I'll explain how I managed that without even trying in another post.

I didn't have any classic symptoms of being a Coeliac. Except being very fatigued. I didn't show any signs of irritable bowl syndrome, I didn't get dermatitis (a skin condition that many coeliacs get)...I was just bloody tired all the time. The danger of not getting diagnosed is serious - osteoporosis and bowl cancer being two big ones. I've had a Dexa scan on my bones - unfortunately they are already showing a less than normal range for my age, so I feel blessed that I'm diagnosed now and can do something about it (incidentally my Mum has severe osteoporosis - she hasn't been tested for coeliac.....hmmmm).

Don't let anyone tell you to go gluten free before you have a biopsy. It's extremely important you keep eating gluten before you go in. Also, a blood test IS NOT a final diagnosis of Coeliac Disease - it is only an indication. The only true way to diagnose is through biopsy (which by the way, doesn't hurt at all - you get to have a nice sleep for half and hour and wake up with no pain at all). There is also a gene test now, so after you've been diagnosed, you can send your immediate family (kids, mum, dad and siblings) off to have a small swab from their mouth. If they have the gene, they need to be monitored. If they don't, they never have to worry about it!

Don't be afraid of being diagnosed either. I can assure you, that despite being gutted about having to give up bread, pasta etc, I have found ways around it, and I now feel absolutely amazing - probably the best I have done in years. I'll share some of my other thoughts on living a gluten free life soon.

Ps - I honestly used to think people with food intolerance's were making it all up! How wrong I was....I am eating my words now!