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What it's like having coeliac/celiac disease


Blame your ancestors

Coeliac disease (also known as gluten enteropathy) is hereditary. If you have it, eating food which contains gluten damages the lining of your small intestine. Once that's damaged, your body won't absorb nutrients properly. You're likely to have smelly diarrhoea or abnormal bowel motions and likely to be skinny. But, oddly enough, some coeliacs suffer from constipation. The severity of symptoms varies greatly, so diagnosis may not be easy.

Fortunately, the cure is amazingly simple - don't eat ANY food that contains gluten.

Since I was diagnosed as a coeliac, I've learned to avoid eating wheat, oats, barley, rye, triticale and millet. Some people also avoid buckwheat (a member of the rhubarb family).

First, a warning

If you think you may have coeliac/coeliac disease or gluten intolerance, see a specialist. If you ignore this warning and simply experiment with a gluten-free diet, you may repair some of the damage to your small intestines and make it difficult for the specialist to give you an accurate diagnosis. Then you may not be certain whether you actually have gluten intolerance, or some other condition.

Disclaimer: I'm a journalist with coeliac disease, I'm not a doctor.

Things it's easy to overlook

If you're a newly diagnosed coeliac, learning how to give yourself a 100 percent gluten-free diet can be tricky. For example, you might overlook such things as products which simply say "starch" on the label (is that wheat starch or corn starch?). Or you might make the mistake of drinking beer or whisky (they contain malt, made from barley). Or you might not know whether you can eat millet (play safe, avoid it). Or you might lick a postage stamp (the glue could contain gluten).

How about those "gluten-free" chocolates you love? The knife used to cut them may have had flour put on it, but the manufacturer doesn't mention flour because he doesn't regard it as an ingredient.

Beware of stolen kisses

Or what about "natural flavours" in your herb tea? Sorry, sometimes they're made from wheat. And be careful kissing your girlfriend - does she wear gluten-free lipstick?

Another trap is lecithin, which is in most chocolate. Usually, lecithin is made from soy beans, but it is sometimes made from wheat.

Here's another trap I fell into. Imagine going to a restaurant and asking for a very simple meal - plain steak and plain steamed vegetables, with no sauces or dressing. Sounds safe? Well, I found out that when cooking steak, some chefs spray the pan with a lecithin spray - which may contain gluten! They'll probably think you're a weird crank if you insist that the steak must be cooked in a pure vegetable oil, such as canola, but you have to do it.

It really can be tricky. So it would pay to study the subject carefully before you make any decisions.

Some authorities differ slightly on what food coeliacs/celiacs can eat. I reckon the best idea is to follow the advice of the Coeliac Society of Australia and avoid all food containing any detectable gluten, and avoid all products derived from such food - so I avoid soy sauces and vinegar that contain malt and I don't eat anything with maltodextrin in it.

A little WILL hurt you

Don't make the mistake of thinking, "A little won't hurt me." Gluten can damage villi - small hairlike things on your small intestines - even although you may be unaware of the damage occurring. When the villi are damaged, you won't absorb nutrients properly. Damage them enough times, and the villi will have trouble repairing themselves. You need a 100 percent gluten-free diet to stop this damage from occurring.

While you're learning about what you can eat, the safest thing to do is steer clear of all processed food. And considering the stuff that goes into processed food these days, that's got to be sound advice.

Don't worry, it's not so bad

On a brighter note, for most people coeliac disease isn't one of those really dreadful diseases. At first, being told you have it is a heck of a shock. But once you get used to the idea, it's quite easy to live with. Sure, you have to avoid the sort of bread, cakes and biscuits other people eat, but (unless you have other allergies) you can eat every fruit and vegetable, pure unprocessed meat, plain cheese, corn and rice.

Have fun experimenting

In the Western world, people eat a lot of wheat, but other grains are more popular elsewhere. Try experimenting with Mexican, Thai and Indian recipes. You may find that having coeliac/celiac disease opens up a whole new exciting world of delicious recipes. I find that I now eat more fresh fruit and vegetables than I used to, so coeliac disease has given me a healthier lifestyle. For a snack, I often eat fruit -- an apple, banana, kiwifruit, mango, peach, apricot, nectarine of whatever is in season -- instead of cakes or biscuits.

Until someone discovers a cure, you'll need to stick to a totally gluten-free diet for the rest of your life, and that will be easier if you learn all you can about the disease and the food you can and cannot eat.

Beware! UPDATE: September 2001

If you read the previous sections and thought I was going too far with my advice on how to be cautious, please learn from my mistakes.

I've just been to see a specialist yet again. I'm what is known as an "unresponsive coeliac". The gastro-enterologist says my gut has failed to repair itself. I took steroids for three years to try to encourage the villi to repair themselves but it didn't work. The specialist says that gluten must have been sneaking into my diet somewhere. I'm now off the steroids, and hoping that my body can repair itself without them.

In unresponsive coeliacs, there's an increased chance of bowel cancer, so I have to have regular check-ups. The specialist says such cancer (she calls it a "tumour") responds well to chemotherapy.

Am I deliberately trying to scare you? Yes. However, all this is true. Be careful out there.

Subscribe to a great newsletter

Ann Whelan, editor/publisher of the newsletter Gluten-Free Living, isn't online yet, but don't let that stop you from getting the newsletter. She has a stack of doctors on her editorial advisory board and has a keen eye for subjects that are sure to interest people sensitive to gluten. For example, the September/October issue has an in-depth look at "Celiac Bones" and 10 tips to help coeliacs maintain sturdy bones. It also has an interview with Dr Michael Marsh, a British physician, author of the book Coeliac Disease (Blackwell Publishers, 1992). Published bimonthly, the newsletter costs $US29 for one year. Sample issues are available for $US5.95 each. Outside the US, use US funds only and add $US7.
The address: Gluten-Free Living, PO Box 105, Hastings-on-Hudson, NY 10706.

Join an Australian coeliac support group

Membership of the Coeliac Society of Australia includes a wonderful quarterly magazine containing medical advice, hints, recipes, cooking advice, and advertisements for good gluten-free products. I'm a member and I strongly recommend membership.

An e-mail support group for Australians and New Zealanders with coeliac disease: http://www.egroups.com/group/coeliacaustralia

To subscribe, send an e-mail to: subscribe-coeliacaustralia@egroups.com

Coeliac Society of Australia contacts

New South Wales: PO Box 271, Wahroonga 2076.
Phone (02) 9411 4100
http://www.nsw.coeliac.org.au

Queensland: PO Box 530, Indooroopilly 4068.
Phone (07) 378 5747
http://coeliacqld.xenon.net/

South Australia: Unit 5, 88 Glynburn Road, Hectorville SA 5073
Phone: (08) 8365 1488

Victoria: PO Box 22, Chadstone Centre 3148.
Phone (03) 9772 7086

Western Australia: PO Box 219, Mt Lawley 6050.
Phone (09) 310 5371

Tasmania: Contact Victoria.
Northern Territory: Contact South Australia.
Canberra: Contact New South Wales.

If you think you have coeliac disease, don't mess around - see a doctor.

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Allan Gardyne, Golden Beach, Queensland, Australia.
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