Monday, 30 May 2011

Why do we feel embarassed about being a coeliac?

Although I am now very open and accepting of being a coeliac and of having a disease that effects the bowel, for many years I wasn't.

I think it was because I have endometrosis, which is very painful and has some rather horrible long term and short term affects and some doctors would completely dismiss that I had this disease and attempt to down play my symptoms by telling me I had IBS. My symptoms were always at the worse when the endometrosis was also at its worse (around that time of month). I always found it so hard to try and comprehend how someone could think that my problems were related to my bowel (wrong end)!!! I have since spoken to a nutritionist who has informed me that the combination of endometrosis and coeliac is a rather horrible mix! No wonder why I was in so much pain.

For some reason endometrosis and fertility based diseases are more socially acceptable than disease that affect the bowel such as coeliac disease. Thankfully this perception is changing in society and it will only continue to change for the better if people are more open and accepting about their condition.

As I have mentioned in previous posts, I had problems from childhood that now I can all refer to as coeliac disease. I remember having bad pains in my stomach for a long time, my mum actually took me to the doctor to find out what was wrong. I had some tests, I think x ray and maybe ultrasound which showed I was constipated (one of the symptoms of coeliac disease). I recall the doctor telling me (I was about 8), that if I didn't go to the toilet regularly I would end up with a bag!!!!. I was needless to say petrified, I didn't want to have to poo into a bag!! Thinking back now the doctor should have done some tests, changed diet etc not scare the crap (literally) out of a little girl and make me think it was my fault. I guess that's where my embarrassment about any bowel problems etc comes from.

Since being diagnosed I've spoken to many people about coeliac disease and endometrosis and I wasn't the only one who had that story. I've listened to people explain their symptoms (so so similar to mine) and then use endometrosis as the only reason for the problems. Even if they have listened to me and have been assured that it is a valid problem, that yes they have endometrosis but coeliac or a gluten intolerance is making the symptoms worse, they still are reluctant to even contact their doctor. I heard one lady I was speaking to say that she didn't want to be the one at the restaurant, at a barbecue, at a party who can't eat a vast majority of food and would rather put up with the symptoms then deal with the embarrassment of being the one who couldn't eat anything, a pain when going out.

My advice to everyone and particularly suffers of endometrosis or poly cystic ovaries, if you are suffering any of the symptoms that I spoke about in my post where I gave the symptoms and information, and you suffer from the puffer fish straight after eating gluten rich foods such as bread, pasta, pizza etc, go and talk to your doctor. Or if that thought scares you try and eliminate gluten from your diet for a short period of time, see how you feel without it, then introduce it after a week and see what affects it has on your body. The diet test will be the best indicator.

Recipe of the Day
Caramel Meringue Pie
This is a family favourite, mum used to make it for special occasions, I never understood why it wasn't a regular dish until I made it. It takes a bit of time, particularly stirring the caramel. I've modified this recipe to make it gf (thus the coconut based pastry).

1 large cup brown sugar
2 teaspoons flour (whatever gf flour available)
70 g butter (diced)
1 cup milk
2 egg yokes
2 teaspoon vanilla essence
4 egg whites
2 tablespoons caster sugar
1/2 cup maize corn flour
3/4 cup milk
1 1/2 cups coconut
120g melted butter

 Pastry: Preheat oven to 180 degrees celcius.  Mix corn flour milk coconut and butter into a bowl, add more coconut if the mixture is too runny. with a spoon press the mixture into a pie dish (make sure it isn't too thick). Place in oven for 10-15 minutes to lightly brown.

Caramel: Place butter and brown sugar into an electric mixer for a few minutes, add flour. Mix 1 cup of milk a egg yokes to butter mixture. Put in a saucepan on low to medium heat stir constantly until thickened (takes 10+ minutes), stir in vanilla. Put caramel into the cooled pastry dish.

Meringue: Mix egg whites with a hand held mixer until it starts to get thicker. Add caster sugar and mix until soft peaks form. Put meringue on top of the caramel and put in the oven for 10 minutes to brown the meringue.