I get quite a few messages from people who have recently been diagnosed with celiac disease. Some of them are asking for advice; some of them are looking for someone who shares their burden.
I’ve been diagnosed for over 5 years now, and I’ve seen the gluten free world change. Gluten free menus are everywhere (although they can’t all be trusted). We have bread that doesn’t literally make me cry. Influencers, bloggers, brand reps, and support groups are all over every social media. You can’t open instagram without a beautiful #glutenfree pastry staring you in the face.
There are wonderful people in the celiac community doing amazing things. I mean, have you seen the Nima Sensor? Sure, it’s expensive and not always accurate at catching cross-contamination, but it’s an amazing leap in technology. I’ve found new brands and products from other celiacs. I’ve gotten awesome restaurant advice and recipes.
But y’all. Some of us need to step up.
We, as a community, are harming people.
This is just my opinion, but it’s a strong one. We are overwhelming new celiacs and making them feel hopeless. Everywhere you turn, there’s a celiac trying to convince you that you can never drink coffee again and bananas are going to kill you. The amount of times I’ve heard— online and offline— that Coca-Cola is rotting my intestine with hidden gluten makes me want to scream.
We need to be safe with our food. We need to read labels. We need to support restaurants that are doing gluten free right, and we need to call out ones that are doing it wrong. (I’m looking at you, Papa John’s.) We need to eat a balanced diet, and realize that gluten free pastries are fattier and sugarier than normal pastries. We need to consider our fiber intake. We need to share great recipes and follow up on labeling laws. There are so many things we need to do. There are so many people doing them right.
There’s one big thing we don’t need to do: scare people away with pseudoscience.
I’m sure you’re doing great on the paleo diet, and yes, buying naturally gluten free foods is cheaper than processed foods. And reducing processed food intake is a great goal!
But by convincing everyone we’re going to die from xantham gum, you’re doing the community a disservice. Although science can’t explain everything yet, fear-mongering can’t either.
I say this out of love: we need to step up. We need to careful, but not paranoid. We need to be honest, but tactful— not instilling fear into the hearts of the newly diagnosed.
This is a huge lifestyle change. Can we please try to make it easier, not harder?