Lauren’s Ceoliac Experience

August 23rd, 2010

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Living with Ceoliac disease in the family

By Lauren.

Four years ago, my mum and littlest sister were diagnosed as being Ceoliac – an autoimmune disease which causes intolerance to gluten. We were all told what they could and couldn’t eat, but we had no idea about the lifestyle changes that would take place.

At first it was almost a relief to find out what was wrong. My little sister was 5 years old, but very ill. She was very small for her age, iron deficient, got tired walking to school and suffered regular stomach pains. The Ceoliac caused initial lactose intolerance also, making her symptoms even worse. It took a few weeks for doctors to realise she was Ceoliac, and as this is a genetic disorder, the rest of the family were tested for the disease as well, and my mum was also diagnosed. The rest of us were clear.

We were told that gluten was in wheat, rye, barley and oats so we couldn’t let my mum or my sister eat anything that contained them. This ruled out food that we all used to take for granted like pasta, bread, cake, biscuits, sauces, crackers, the list is endless. But we managed it, and they both live a very happy, normal lifestyle, and my little sister is now a very healthy 9 year old.

At first we tried to replace ‘gluten-in’ items with shop bought gluten free ones for the Ceoliacs to eat, while the rest of us continued to eat normally. This worked for a little while, and my sister started getting better. However, it was difficult to keep the Ceoliacs completely Gluten Free whilst having gluten in the house as it was so easy for food to get contaminated. Even a tiny crumb could cause problems, so we stopped having gluten in the house at all, and we all ate gluten free. However, most gluten free products you can buy are from big chains that have tried to substitute other ingredients like egg or milk as well, appealing to a larger population of intolerant people. This usually leads to the products tasting disgusting, so you can see why I didn’t like the idea to start with. Nonetheless, it was in my family’s best interests and their health was most important.

By then, we’d started experimenting with gluten free cooking. A lot of foods weren’t too hard to make differently, any gluten free flour can work well in a sauce or biscuits, and most of the corn pastas taste no different from wheat ones.

However, bread and cakes were a challenge. Gluten gives food its elasticity and bounce, and without it, bread and cakes can be crumbly and dense and usually taste horrible. Bread can’t rise or be sliced so sandwiches are almost impossible, leaving Ceoliacs with little lunch ideas. Therefore, it was important for us to keep trying.

First, I conquered chocolate brownies. I adapted gluten-in and gluten free recipes, and tried out different brands of gluten free flour until I found perfection, and now I prefer my own brownies to normal gluten-in versions. My dad was working on gluten-free bread, using a breadmaker. Eventually, he cracked it using the effective gluten substitute, xantham gum which I can strongly recommend, and now makes delicious loaves like cranberry bread, rosemary and garlic bread and more that are enjoyed by Ceoliacs and non Ceoliacs alike.

After our initial breakthroughs it became easier to adapt other recipes and bake deliciously. But, of course, no one can bake all the time and we did find delicious brands of things like biscuits and pasta that we now buy regularly.

So, we’d mastered eating at home but the next difficulty was eating out, and still today, many Ceoliacs just don’t do it because it’s so difficult.

Like me before our family was diagnosed, most people don’t know what gluten or Ceoliac disease is, therefore, asking a waiter or waitress what items on the menu were gluten free provided little help. So through trial and error we found restaurants that were helpful and restaurants that were a little less so. A few in Bristol have special gluten free menus, or at least fantastically imaginative chefs, and we found great service in places like Casa Mexicana that will make corn tortilla for Ceoliacs, or Pizza Provencale who make gluten free pizza bases. However, most places are boring and just suggest the salads.

Eating abroad is the most difficult, but if you’re brave enough to learn bit of the language and ask the right questions, a Ceoliac family can eat out and enjoy themselves. Even if you’re not brave enough, you can buy ‘Dietary Cards’ which explain what you can and can’t eat in several different languages. Our family has over 20.

Scoopaway has a growing Gluten Free section with a wide variety of pastas and noodles that I can highly recommend. Just make sure you keep stirring it while it cooks and change the water at least once, and you’ll have pasta that tastes no different from the gluten-in versions.

Scoopaway also has a delicious selection of cookies, biscuits and other treats that provide good substitutes, and also all the ingredients you could need for your own gluten free baking, including flours, gluten free baking powder and the revered xantham gum. The shop also sells Spatone which is a very effective iron supplement that helped my little sister regain her health without some of the side affects that other iron supplements are notorious for.

Ceoliac disease sounds scary and debilitating and the fact that I may one day develop it myself once terrified me, but now I’ve found that food can be made gluten free if you just take time experimenting. And there are so many items out there that are as delicious as the gluten-in variety. There are restaurants Ceoliacs can safely eat in, and places like Scoopaway where helpful advice can be found as well as gluten free food. I happily eat a pretty much completely gluten free diet now anyway, being diagnosed as a Ceoliac wouldn’t make much of a difference.