Today is Celiac Awareness Day, by resolution of the US Senate.
With news of celiac disease and the gluten-free diet everywhere, I couldn’t help but think of how far we have come in raising awareness of a disease hardly ever heard of when my own daughter was diagnosed almost exactly 18 years ago.
It has come with some very hard work by every day people spreading the word, as well as through organized efforts by foundations, support groups, businesses and the medical community.
At Gluten-Free Living we have tried to do our part with a commitment to wipe out incorrect information about the gluten-free diet, while searching for the most reliable information we can find. We think this is the best way to ensure that you have a happy, healthy gluten-free life.
But every once in awhile I am reminded that there is still a lot of work to do.
I spent several hours on the phone last week with someone recently diagnosed who is struggling to eat gluten-free meals that are safe, varied, nutritious and tasty. In our conversation, I was transported to the early days after my daughter was diagnosed and I stood in the bread aisle of my local supermarket barely able to breath. All I could think was that if we were trapped among the shelves stacked high with food, she would still have nothing to eat.
It’s been a long time since I recalled that feeling. But the person I was talking to had just had a very similar experience. She was nearly in tears as she roamed her grocery looking to fill her shopping cart.
One of the things making her job so difficult was bad information she had been given about what was and was not safe to eat. For example, she was desperately searching for gluten-free vanilla extract, having given away the perfectly fine bottle she had had at home. She thought tomato soup was the only one safe on the gluten-free diet. And anything with vinegar, she had read, was out.
It doesn’t take long to figure out how someone with celiac disease can get bad information, when only two weeks ago the Wall Street Journal ran a story that incorrectly said ketchup and ice cream have gluten-containing fillers, that vinegar is fermented with gluten and that lipstick and envelope glue contain gluten. In a letter to the editor we wrote in response to the story we said, “The gluten-free diet is the only cure available to those who have celiac disease and results in improved health for those who are gluten sensitive or intolerant. But it is a challenging diet and misinformation only makes it needlessly more difficult.”
Although the Wall Street Journal ran a correction, I saw its information about ketchup repeated in a Washington Post blog about barbecue sauce.
To stop the spread of bad information, we don’t promote stories that contain inaccuracies on this blog or on our Twitter or Facebook sites. We know how hard it is to pull back bad information once its blasts across the Internet.
The first step in improving celiac disease awareness is to make it so well know that doctors test for it in every case where it is a possibility. The second is to make sure that once a person is diagnosed they are given accurate information about how to follow the diet. From there, we can do amazing things like getting food makers to produce better gluten-free products, restaurants to prepare truly gluten-free meals, schools and colleges to provide options for gluten-free students, and ball parks to offer gluten-free hot dogs, buns and beer.
When I started the gluten-free journey with my then two-year-old daughter, only the most optimistic in the gluten-free community dared to dream about these things–which are now becoming realities. The rest of us were just trying to figure out how to prepare a gluten-free breakfast, lunch and dinner every day.
We can’t forget that the challenge of eating gluten-free is still very real, especially for the newly diagnosed. We have come a very long way, but we still have ground to cover.