For celiac disease sufferers, the simplest meal out or dining at a friend’s home can be a minefield. Living gluten-free is hard work – and not just in the kitchen.
“People think your food issues are all in your head,” says Serena Jordan, 54, from Calgary, Alberta. “It’s as though it’s an inconvenience to them if you have to call a restaurant ahead of time or bring your own snacks along.”
In fact, celiac disease is very real – and quite serious.
What is celiac disease?
Celiac disease is a digestive condition where consuming gluten triggers an immune response in the small intestine. This damages the lining of the small intestine and makes it difficult for sufferers to properly absorb important nutrients.
There are no typical signs and symptoms of celiac disease which makes it difficult to diagnose. It also means that sufferers can have a difficult time being taken seriously, as by the time they are diagnosed they may have had many complaints and been perceived as “whiners.”
There is no cure for celiac disease. The only treatment is to avoid gluten entirely. Even trace amounts – like dipping a spoon into gravy thickened with flour and then using that spoon to stir gluten-free gravy, or cutting gluten-free bread with a knife used to cut wheat bread – can cause a reaction.
And gluten is everywhere – in anything containing wheat, barley, rye, and perhaps oats (the scientific jury is out when it comes to oats). Additives such as malt flavourings also contain gluten.
Gluten is plentiful in the North American diet, which tends to include a lot of processed foods, which contain gluten as filler or gluten-based flavours, such as malt. Sufferers can start to feel like food police.
“I hate to feel like I’m policing my family’s kitchen,” says Serena. “But people who don’t have this problem just don’t understand. They mean well, but they’ll forget to check a label or to wipe off all the crumbs on the counter. And with friends I sometimes get the feeling they think I’m exaggerating. I’ve gotten to the point where I rarely go out to a restaurant with certain people.”
The good news, however, is that if a sufferer is able to maintain a gluten-free diet the small intestine does repair itself in most cases – although this can take up to three years for older adults.