Living with Coeliac Disease
Living with coeliac disease is hell, challenging and fun.
Hell because you can’t go out spontaneously as you have to research every restaurant before you can try them.
- Do they know what gluten free is?
- Can they cater gluten free?
- Do they have naturally gluten free items on the menu?
- Do they baste their steaks with anything?
- What do they baste them with?
- Do they make the basting sauce or do they buy it in?
- What are the ingredients in the sauce?
- What are the ingredients of the ingredients in the sauce?
- Are they prepared to declare all the ingredients?
- Are they prepared to cook your meal separately from the rest?
- Are they prepared to clean the pan which they use?
- Are they prepared to allow you to see that the pan is cleaned properly?
- If they make a “mistake” are they prepared for you to go to the kitchen to ensure that they do prepare another meal – and not just remove the offending item?
- Lastly are you prepared to put someone else through this interrogation to ensure that your life is looked after by outsiders?
Challenging not only when going out, but when daily shopping
- Its reading labels every time you shop.
- Is the maltodextrin corn based, wheat based, tapioca based or barley based?
- Is the thickener corn based, wheat based, tapioca based or barley based?
- Is the stabilizer corn based, wheat based, tapioca based or barley based?
- Is the product made in an environment that could compromise your life?
- Has the ingredient list changed since the last time you used the item?
- Can you trust the manufacturer to reveal what is actually in the item?
Spices are a prime example; certain brands do not even list their ingredients on the label but from experience and research I know that the spices are not always in their purest forms.
Have you ever noticed the different colours of cinnamon and curry spice, sometimes dark and sometimes much lighter? Stand your cinnamon spice jars together and inspect them.
Basting sauces and mayonnaise are another example where the ingredients are not always safe.
How about smoked products? Is it a liquid smoke, or is it actually smoked? Liquid smoke has a more orange colour to it and contains wheat.
I could go on.
I suggest that if you are in doubt you phone the customer care line and insist on knowing the answers to your questions.
Because have to keep checking labels, you keep finding new products that you would never otherwise have tried. You also make a whole lot of new friends whilst shopping. Retailers are fascinated by the fact that you spend 3 hours in their shop and walk out with R200 worth of stock.
If you allow this disease to rule your life – which it must do to enable you to live a pain free, toilet free life – you appear to be neurotic. The best thing to do is to explain that your life depends on not eating wheat or gluten.
It’s hard to be a nuisance or inconvenience to everyone else, but you just have to own your disease and keep explaining to everyone that this is the way you have to live from now on.
I was diagnosed 20 years ago and now it’s the norm for me to live this way and everyone who knows me has learnt to accept me when we go out. I shop at one shop regularly. They have been so good about increasing the gluten free products. I always get a report on anything new that has come into the store and are they are always very willing to get in a specific product in if it looks like I’ll buy it regularly.
I love to feed people and to bake. I would spend the whole day in the kitchen producing safe products for me to eat and land up with this heap of products and not enough time to eat them all.
The major upside of having coeliac disease is that I was challenged by a master baker to produce a gluten free product in 2001. Since I had lived this way for so long I was able to give him a biscuit out of my biscuit tin. He wanted the recipe I told him I would sell him the product and that’s how The Allergen Baker was born.
We have grown slowly and steadily and now have 8 biscuits, 4 rusks, 5 flour mixes that we sell commercially. We also produce bread and cakes on demand.
I can be contacted on email@example.com or 082 2933168 if you need support or advice.