Chapter 5

Finding and Using Good Resources

In This Chapter

Searching for information

Finding good support

Using reliable resources

H uman communication has come a long way from its humble beginnings. The grunts and growls of our cave-dwelling ancestors developed over millennia until they were able to pass on information by word of mouth and through primitive cave drawings. The development of writing and later printing opened up huge possibilities for far greater communication with people living further away. Improved communication meant that knowledge could grow and be shared at increasingly rapid rates. Over the past few decades, we’ve seen an astonishing explosion of not just knowledge, but also the means to pass on that knowledge. With radio, television, books, libraries and the internet, an individual can access information on just about every aspect of human knowledge.

The trouble is, while you have almost unlimited access to almost unlimited information, you don’t always have the capacity to sort out the facts from the fairytales. So much information is out there, if you go looking when you’ve just been diagnosed and told you need a gluten-free diet, it won’t be long before your head is spinning like a mosquito on speed.

In this chapter, we cover the search for information, how to sort fact from fiction and where to go for support and help.

Searching for Information: The Good, the Bad and the Completely Ludicrous

The good news is that loads of information on gluten, gluten intolerance, coeliac disease, related disorders and the gluten-free diet is available. The bad news is that much of it is garbage.

No matter what the source, always question the credibility of the authors and remember that even seemingly credible sources can perpetuate bad information.

You may find that a lot of the information is conflicting. One source says hot chips are safe, another says they’re not (in most cases they are). Here are a few tips to help sort out the reality from the ridiculous:

• Check the publication date. Information on the internet and in books and magazines can become outdated the minute it’s published, so ensure what you’re reading is current.
• Look for credentials. Are the authors knowledgeable, or are they just sharing personal experiences and opinions? Where do they get their information? Not all writers are reliable: You don’t need a licence to publish, nor do you have to let the facts get in the way of a good story.
  

  Don’t believe everything you read, just because it’s on the printed page. Look at who wrote it and whether they’re qualified to write about the topic. In some countries, you can ‘buy’ a university degree, call yourself Doctor and publish what’s no more than your own personal opinions.

• Use only reliable sources. To avoid confusion and mistakes, stick to official sites and sources. You can read widely or surf to your heart’s content about other issues, but when your health is involved, you need the right facts and the correct advice.

Knowing who to believe

Knowing where to look for the right information is important or you can start to get confused by uninformed people, or by information sources that are just not accurate. The issue of contamination is a good example of this.

Sometimes people worry about contamination and, it’s true, contamination of gluten-free products can occur. Contamination in your own home, on a regular basis, is, of course, a serious issue and you need to do everything you can to avoid it (see Chapter 7 for information on contamination in the kitchen). Contamination in a restaurant is also something to be aware of. We talk about checking on the possibility of contamination when you’re eating away from home in Chapter 16. These are times of greater risk than in your own kitchen, where you know exactly what’s going into your meals.

But some people read about and then worry about contamination that’s actually way beyond their control. What if the packet of gluten-free flour you buy is contaminated during processing or packing? What if contamination occurs right out there on the farm where your rice is grown? Sure, it could happen. But the risk is extremely slight because the food labelling laws are so strict. A minuscule dose of gluten on an extremely rare occasion isn’t going to alter the course of destiny for you.

We don’t live in a perfect world and mistakes do occur. In reality, we face a certain level of risk in every aspect of our everyday lives, but we’re so used to it that we don’t notice. We take a risk each time we leave the house and drive to the shops, or to work. We take a risk when we eat any form of processed food, or even ‘natural’ food. We don’t lose sleep over it, though, because the risk is so negligible.

If you’re feeling worried or confused about your diet or some other aspect of living with coeliac disease, don’t feel embarrassed to seek help from your GP or a dietitian. You can be sure you won’t be the first to ask that question — you likely have a lot to learn at first.

Whatever you do, don’t become so worried about accidentally eating gluten that you lock yourself away from the rest of the world in a gluten-free bubble and forget to enjoy life. Keep yourself well informed about where the real risks lie so you don’t waste good nervous energy worrying about teeny weeny possibilities that will probably never, ever occur. If you find information that makes you worried, check it with your GP, a dietitian or one of the sites listed in this chapter. Coeliac Australia receives phone calls every day from members who are worried or confused about misinformation.

Ignoring the hype

Labels are cluttered with tempting enticements like organic, all-natural, no GMOs, healthy, nutritious and good old new and improved. Some of these may be important to you and some of them are pure hype, but none of them says anything about the gluten-free status of a product. In fact, ‘new and improved’ is actually a signal for ‘now you definitely have to check ingredients — again — because we’ve changed our formula’.

People sometimes make the erroneous assumption that if a product is healthy, it’s more likely to be gluten-free. Not true. In fact, if you see the words whole grain emblazoned on a label, step away from the product. Chances are it’s not gluten-free.

‘Organic’ has absolutely nothing to do with ‘gluten-free’. A product or food may be organic and gluten-free, or organic and loaded to the hilt with gluten.

Even if a product says wheat-free on the label, that doesn’t mean it’s gluten-free. You still need to watch for barley, rye and oats — as well as their derivatives.

Sometimes when you’re looking at a product to see if it’s gluten-free, an eager shop assistant will assure you that it’s organic, as if that was the end of the matter. ‘Well, it’s organic, so I’m sure it will be okay.’ Organically grown wheat, rye, barley or oats contain exactly the same amount of gluten as their non-organic cousins.

Checking with food manufacturers

Thankfully, you rarely have any need to spend frustrating hours waiting in a phone queue to get product information. (‘Thank you for your call … You have progressed in the queue … Your call is important to us … Did you know … We value your call’ — all accompanied by intolerably bad music. Urrrgh!) Because Australia has such a high standard for product labelling, the information you need to know about whether it’s gluten-free is right there on the product.

You should only need to ring a manufacturer on the rarest of occasions (the dog ate the empty packet before you checked ingredients, your hostess put the jar in the bin that was emptied this morning, you desperately need a particular product in the supermarket but you left your glasses at home and are too shy to ask a stranger to read the label, the cafe staff are positive one of their cakes is gluten-free but aren’t sure which one it is, and other tragic tales).

You can ring a manufacturer to thank them for a new product, or tell them how much you love their muffins/beer/pumpkin soup, or congratulate them for making the effort to replicate the foods you loved but couldn’t eat. People at the other end of the line are used to receiving complaining, angry, downright rude and occasionally obscene calls, week in, week out. It simply makes their day when someone calls with a positive comment or heartfelt thanks. Try it one day — the delight in the voice at the end of the phone line will give you a lift too! Positive messages do get through to the top and — who knows? Your appreciation may inspire the manufacturer to create even more gluten-free treasures for you to enjoy.

Most of the special dietary foods on the shelves are there because enough individuals jumped up and down and demanded gluten-free products. A phone call to a manufacturer (or letter or email) giving positive feedback about a product can only be a good thing. This applies particularly to the small, local manufacturers.

When you’re not feeling well or have the symptoms you usually get after eating gluten, don’t simply assume that the last meal or snack you ate contained gluten. Maybe it did, but maybe your symptoms are caused by something else. Keep an open mind about the source of the trouble.

Books

Many wonderful gluten-free cookbooks are on the market and some are available online. You can also find many good gluten-free recipes online, but read the ingredients carefully because overseas standards are different from Australia and New Zealand. We can’t possibly list all the books available, but here are a few (just because a cookbook isn’t listed doesn’t mean it’s not good):

• 4 Ingredients: Gluten Free, Lactose Free by Kim McCosker
• Bread, Buns and Breakfasts by Lola Workman
• Coeliac Australia’s Gluten Free Recipe Book
• From My Kitchen to Yours by Sally Wise
• Forever Yum! Gluten Free Family Fare from John Hunter Children’s Hospital
• Gluten-Free & Allergy-Free Eating from The Australian Women’s Weekly
• Gluten-Free Cooking For Dummies by Danna Korn and Connie Sarros
• Gluten Free Favourites from Mary’s Kitchen by Mary Kiwarkis
• Gluten-Free Soups, Sauces and Marinades by Ric Hunter
• Low GI Diet for Gluten-Free Cooking by Jennie Brand-Miller, Kate Marsh and Philippa Sandall
• Multi-Allergy Cookbook by Lola Workman
• What’s Cooking? Coeliac Australia
• Wheat-Free World by Lola Workman

Support Groups

A diagnosis of coeliac disease can leave you feeling bewildered, isolated and anxious about your new diet. It can also raise your interest in medical or dietary issues, so your head is brimming with questions. For a time, you’ll want to share your experience of diagnosis, your thoughts and your fears with others, until you’ve worked through them. Finding other people who are going through the same process, or have in the past, can really help.

Because your gluten-free diet is lifelong, you need up-to-date information about gluten-free issues over the years. And you may be really interested in keeping up with the latest research into coeliac disease or gluten intolerance. If you’re a parent of a coeliac child, you may share many of these needs and another 102 questions may be spinning around in your brain. Thousands of coeliacs (over 20,000 to be precise) find many of their needs are met by joining Coeliac Australia, which gives information and support to those who are medically diagnosed with coeliac disease or dermatitis herpetiformis, and those medically diagnosed as requiring a gluten-free diet.

Members receive a quarterly magazine loaded with information, recipes, research articles, members’ stories, travel and dining out information and puzzles for children. They also receive a handbook packed with information, a recipe book and the Coeliac Australia’s Ingredient List. State societies hold regular functions such as information sessions, new member meetings, cooking demonstrations, shopping tours and children’s events. Gluten-free food expos are held in most capital cities. Contact groups hold meetings and run functions in suburban or country areas where you can meet other coeliacs and share experiences and ideas.

To join Coeliac Australia, you need a letter from your doctor indicating a medical need for your gluten-free diet.

The contact details for Coeliac Australia (CA) are as follows: P.O. Box 271, Wahroonga, NSW 2076; phone 02 9487 5088, or 1300 990 273, fax 02 9487 5177; email [email protected], website www.coeliac.org.au.

You can contact your state organisation on 1300 GLUTEN (1300 458 836 on a landline only) or by contacting the addresses listed here:

New South Wales and ACT, P.O. Box 271, Wahroonga, NSW 2076; Suite 1, 41–45 Pacific Highway, Waitara, NSW 2077; phone 02 9487 5088, fax 02 9487 5177; email [email protected].

Queensland, 91B Wilston Road Newmarket QLD 4051; PO Box 3455, Newmarket, QLD 4051; email [email protected].

South Australia and Northern Territory, Unit 5–6, 88 Glynburn Road, Hectorville, SA 5073; phone 08 8336 1476, fax 08 8365 1265; email [email protected].

Victoria and Tasmania, P.O. Box 89, Holmesglen, VIC 3148; 11 Barlyn Road, Mt Waverley, VIC 3149; phone 03 9808 5566, fax 03 9808 9922; email [email protected].

Western Australia, P.O. Box 726, Bentley, WA 6982; Unit 2, 4 Queen Street, Bentley, WA 6102; phone 08 9451 9255, fax 08 9451 9266; email [email protected].

Coeliac NZ, P.O. Box 35 724, Browns Bay, Auckland 0753; phone 09 820 5157, fax 09 476 7251; email [email protected], website www.coeliac.org.nz.

Many other countries have their own support groups, including Ireland, Spain, the United Kingdom, Finland and the US. You can find them with a quick internet search.

If you look at overseas sites, keep in mind that definitions of ‘gluten-free’ and labelling standards and regulations vary from one country to another.

The Internet, for Better and for Worse

The internet’s wonderfully convenient. You can be in your PJs, coffee mug in hand, before dawn (okay then, that’s a bit unlikely — at 2.00 am) and find out more about gluten than you ever knew you didn’t know. The problem is that you can’t always trust what you read online and checking credibility is difficult. Visit any chat room and you’ll meet a fascinating cross-section of the human race. Some will be experts, some will think they’re experts and some will be just right out there on the second planet on the left after Neptune. If you talk to people face to face you can usually get an idea of who the weirdos are, but it’s much harder to tell when you’re online. You need to watch out for the weirdos but, more importantly, for the people who think they know, but really don’t. If you believe everything you read in chat rooms, pretty soon you won’t have very much left to eat, because someone or other will have said it contains gluten.

Furthermore, people publish information on the Web and sometimes forget about it or don’t take the time to update it. What you’re looking at could be several years old — and many things have changed in the past few years.

Reliable websites include

• www.healthinsite.gov.au: A government website with information about coeliac disease and related conditions.
• www.gesa.org.au: The website of the Gastroenterological Society of Australia. Here you’ll find an excellent update (4th edition) on coeliac disease (available at www.gesa.org.au/files/editor_upload/File/Professional/Coeliac_Disease4Ed07.pdf) and helpful recommendations.
• www.coeliac.org.au: You’ll find links to each of the state societies, more details about how Coeliac Australia can help and information on how to join.
• www.daa.asn.au/Dietitians: The website for the Dietitians Association of Australia, where you can access a list of dietitians experienced in coeliac disease. (If you can’t find one in your area you can ring the Association on 1800 812 942.)
• www.foodstandards.gov.au: You’ll find details here of the food standards that apply to all foods produced or imported for sale into Australia and New Zealand.