Gluten-free living - here's where to start

Not yet diagnosed?

Do not eliminate gluten from your diet until you have a proper diagnosis. Not only will a diagnosis of coeliac (celiac) disease (or dermatitis herpetiformis) get you prescriptions for gluten-free foods, but if you do not eat gluten, the damage to your intestines will slowly heal, and it may be difficult to get a diagnosis at all.

Newly diagnosed?

Start here:

• join Coeliac UK or any equivalent in your own country. If you're in the UK, CUK will send you a copy of the 'bible' - a list of which foods sold in the UK are free from gluten. This is broken down by kinds of food, and by supermarket. There are monthly updates to this, as things change all the time - be sure to stay up to date. They will also send you regular magazines containing articles, recipes and news.
• find a local branch of Coeliac UK or equivalent. These meet a few times a year, often arranging events around gluten free foods, such as cooking demonstrations or food-fairs. This will give you a chance to talk to others in the same situation and swap ideas.
• contact the major manufacturers of gluten free food. (See our list of favourite suppliers). They are very keen for you to try their food and will probably send you samples.
• be alert to the danger of cross-contamination
  • Set aside a cupboard or a shelf for your own special foods, to avoid getting crumbs from gluten-containing foods into your foods. We have a separate breadbox as well.
  • You will also need a separate, and clearly marked, tub of butter/margarine and of marmite/jam etc, to avoid crumbs from someone else's toast getting onto your toast.
  • Some people buy a second toaster, but you could toast under the grill (making sure there are no crumbs of gluten-containing foods) or buy some toasterbags.
• be prepared for shopping to take a long time to start with, and always be prepared to take your own foodstuff with you. Some people keep emergency supplies of non-perishable food in the car; others keep stuff in their desk, just in case.
• visit the Message Board - it can be a lifeline, and a way to get those niggling questions answered.
• be prepared to spend a lot of time explaining to other people why you can't eat various things. This can get boring, but the more people you explain the gluten-free diet to, the more people will understand, and the better known the condition will become - and the easier it will be for everybody else.

Just got a diagnosis? Wondering how you'll manage?

Living without gluten needn't be that much of a problem, whether you've been diagnosed as coeliac (celiac) or need a diet with no gluten for some other reason. There are lots of specialist food suppliers now, and the quality of gluten free food is improving all the time. However, getting used to it is difficult, and shopping will take extra time until you've learnt what you like, and what to avoid. Other people can make it difficult too, whether these are family members who can't or won't understand the diagnosis, catering at school or work, or restaurant staff who simply haven't come across it before, and perhaps think you are just a faddy eater.

And simply having to explain - every single time - what you can't eat, and what the effects will be of getting it wrong can be very boring. Or embarrassing!

If you or your child can't, or feel unable to, explain - yet again - take a look at our new clothes or other kit which will help remind people of your special diet.

Recommended Books

We can recommend most of these books, as we've bought these ourselves. The Gluten Wheat and Dairy Free Cookbook and Allergy-Free Cooking for Kids by Antoinette Savill have a range of interesting recipes in. The Wellfoods flour that Antoinette Savill uses is excellent, and behaves very like ordinary flour. It's available mail-order but I recommend phoning an order - it will be available on prescription in the UK very soon. For other flours, see the UK prescription list.

The book by Danna Korn (Kids with Celiac Disease)is useful - American-oriented, because that's where she lives, but has a lot to say for parents of newly diagnosed children wherever they are.

Useful Products

The breadmaker has a gluten-free program, which helps, though it is possible to make very interesting gluten-free bread with a breadmaker with no specialist program, or even without a breadmaker. You will find that you may need to add xanthum gum to act in place of the gluten - you can buy this at most supermarkets or health food shops.

The toastabags are here because you will not be able to make toast in a toaster that is also used for bread containing gluten. This is because of the risk of contamination - if you've looked inside a toaster recently, you'll remember that it is full of breadcrumbs! If you don't have money or space for a second toaster, these toastabags will protect your slice of bread from any contaminating crumbs.

Note: 'Celiac' and 'coeliac' mean the same - one is an American spelling, and the other is British. We aim to use both, but we recognise that there are many reasons to need a gluten-free diet, and we don't intend to exclude anyone by using 'celiac' or 'coeliac'.