All I Want for Christmas Is...
With the 2021 holiday season upon us, my thoughts turn to my wish list. Not a list of 'gimmes' - no new car, new clothes, or new set of earrings. I'm thinking about what might make a real difference in my life, in the way that a new pair of shoes just can't.
Here's my wish list for my celiac life for the 2020 Holiday Season. Santa, pay attention please....
Global standards for gluten-free labeling
Less than 20 ppm. No gluten. Made in a facility that also processes wheat. May contain traces of gluten. No gluten-containing ingredients. Tested for gluten. Gluten-free certified. Everywhere you go, they call it something different. Wouldn't it be nice to have a single standard for gluten-free labels?
Celiac disease is a medical issue, and bodies don't behave differently in different countries. Why can't we have consistent standards and labels for celiac-safe foods?
Reasonable prices for gluten-free baked goods
Prices on our gluten-free goods are ludicrous: up to 330% more than their gluten-containing equivalents! I understand that wheat is cheaper than our gluten-free starches. And I understand that safely changing from gluten-containing to gluten-free products in a manufacturing plant requires more attention than switching from Wheaties to Total.
But this looks suspiciously like price-gouging. Why should celiacs have to put up with this? How is someone feeding a family on a worker's salary, not an executive's, supposed to manage?
Celiac disease training for all physicians
Sharing diagnostic and treatment horror stories has become a badge of honor in the celiac world: the number of doctors you had to visit, the times they told you it was all in your head. Beyond Celiac is collecting these stories to help push for a cure (share yours here).
Too few physicians know to when to consider celiac disease. How can that be? Celiac disease is not rare; it's estimated to affect 1% of the US population (about 3 million people, or 1 in every 133).
Every family physician, pediatrician, rheumatologist, neurologist, and of course gastroenterologist should have it on their differential list of possible diseases. Don't rule it out if the patient doesn't have diarrhea; celiac disease can cause more than 300 symptoms.
You're already taking blood for testing - send it for antibody and genetic screening too. Follow up with a biopsy if indicated. And then provide useful counseling for changing to a gluten-free diet.
Safe food on planes and in airports
For more than 20 years, I was a road warrior; I used to say I lived on British Airways. And yet for all the time that has passed, all the increased awareness, it's just as hard to find gluten-free food in most airports or on planes now as it was in the 1990s.
Over on Instagram, @glutenfreegrub posted about this and had thousands of reactions in a day or so. It brought back nightmares! Gluten-free meals on the plane delivered with a regular roll on the tray. Pacing the length of the concourse and finding nothing substantial to eat. Making yet another "meal" from a cup of ice cream and an old banana. Asking for 2 tomato juices from the drink cart to fool my stomach into thinking I've eaten a meal. Reviewing the 'food for purchase' menu and finding nothing gluten free beyond the drinks.
And yet, it could be so easy: Popcorn. Hummus with veggie sticks instead of pita chips (the same pre-made packs I find in the supermarket). Chicken breast and steamed vegetables served with rice, not pasta, and a tiny bit of training for the cabin crew.
I don't expect the same level of choice or quality that I find in a five-star restaurant. But a safe, decently tasty and somewhat nutritious meal that happens to be gluten free is not such a big ask.
Easy, Tasty Gluten Free
And of course I want to keep spreading the Easy, Tasty Gluten Free word as far and as wide as I can. So newly diagnosed celiacs and the parents of newly diagnosed celiac children can share food and love with their friends and family.
It really is possible, despite the challenges we face, and I'm the proof. Accidentally diagnosed by a doctor who couldn't help me, in the pre-internet years, with just one of Bette Hagemann's books and my local support group (who found by accident). I adjusted, and I thrived: lived on 3 continents, traveled the world, and created these recipes to help you thrive too.
And share your story. What do you want this year?