Kevin Page on coeliac disease: Getting the wrong end of the gluten-free stick

A woman rejecting bread. Coeliac disease is a serious auto-immune disorder that can kill you, writes "Northern Advocate" columnist Kevin Page. Photo / File

As regular followers of my weekly ramblings may have picked up, my household is required to adhere to stringent rules when it comes to the food we eat.

The reason we have to watch what we eat is because Mrs P suffers from a pretty frustrating thing called coeliac disease.

Now, before your interest wanes and you stop reading, I promise I'll explain the serious bit in a couple of paragraphs, in my own non-scientific way ... and then I'll tell you a story.

Here's what I know
This is what I've worked out from numerous discussions over the past five years with doctors, specialists, dieticians, the bloke at the service station who has it and my mate Jimmy who read something about it a while ago in a magazine he had in the loo. Okay. Here goes.

Paragraph 1
Coeliac disease is a serious auto-immune disorder that can kill you. Basically, stuff in food called gluten eats away at the filters in the stomach of a person with coeliac disease and poisons you from the inside. The majority of sufferers will get severe pain, bloating and diarrhoea if they eat anything with gluten in it. Symptoms can also range from neurological disorders, skin rashes, just about everything. Worst-case scenario is progression to a more-rapid terminal illness.

Paragraph 2
Tens of thousands of New Zealanders suffer from coeliac disease. Many others may have it but may not know they have it. They may put up with ongoing pain, bloating, cramps etc and put it down to something they ate last night. Or they can get tested.

Paragraph 3
(I know, I know. Sorry. I'm on a roll and this bit is real important). Going on a gluten-free diet is a choice. Your friend - the one who read at the hairdressers that going gluten free will give her more energy – can have a gluten-laden dessert after a gluten-free main next time you go out and she won't get sick. Coeliacs don't get that choice. At all.

The story
Right, now to the story I promised. Funnily enough it's about our struggle with getting people to understand coeliac disease.

We are on the road looking for a place to have a bite. I won't tell you exactly where because that would be unfair. I fully get that not everyone understands about coeliacs but maybe this'll give you a little bit of an idea what people with it have to go through.

We find a place and I do my normal thing, go in and inquire about gluten-free options for coeliacs. It's a well-rehearsed speech: Wife ... coeliac disease ... gluten-free ... vital ... and the phrase I always think get their attention ... could die.

The pasty-faced, young man behind the counter gave me one of those glazed over expressions, mouth partly open which indicated he didn't have the foggiest idea what I was on about.

So he decided he'd go ask the boss for help.

Within two minutes a very pleasant gentleman came round from behind the counter to discuss, in his words, my "sad circumstances".

Now I don't know exactly what the boy had said to the boss but I'm picking he'd only picked up on the key words of my request and had basically said I needed something gluten-free for my dying wife.

And that's exactly what I got. Free of charge and delivered with a very sincere, thoughtful "best of luck" as he saw me on my way.

Now, in case you think I'm some sort of trickster who enjoys getting free goodies, I should point out the predicament I found myself in over the misunderstanding. He had been so sincere and kind I was somewhat taken aback and rendered speechless, which is a rarity for me, so I didn't say anything.

Obviously that made it worse and as I got to the car I knew the line had been crossed 10 steps ago and there was no way I could go back now without embarrassing everyone concerned.

So to my shame I drove off.

Ironically we couldn't risk eating the piece of gluten-free cake he'd given us. I'd seen it in the cabinet next to another scrummy looking item so I couldn't be sure there had been no cross contamination from the cake slice (another thing coeliacs have to watch carefully).

But I've decided if I am ever back that way again I'll go in and see if he'd like to join me for a cuppa so I can explain the whole thing to him properly. Might even buy him a piece of cake. Gluten-free of course.

■ Kevin Page is a teller of tall tales with a firm belief too much serious news gives you frown lines. Feel free to share stories to kevin.page@nzme.co.nz .