Aging with celiac disease carries a fear that goes far beyond getting older. Many people worry about what will happen when illness, disability or age forces them to depend on someone else to prepare safe gluten-free food.
When I asked people with celiac disease what they feared most, many talked about getting older.
But the fear was not simply aging.
It was losing control.
Most of us build our safety around control because that is what this disease requires.
We buy the groceries.
We read the labels.
We manage the kitchen.
We watch the spoons.
We ask the questions.
We decide whom to trust.
Not everyone passes the test.
Aunt Susie, who still wonders why nobody heard about celiac disease when she was growing up, is probably not preparing my food.
Aunt Betty sends me photos of labels and asks whether something is safe.
She may earn my trust.
Until I watch her stir the gluten-free food and the gluten-containing food with the same spoon.
Right now, I can stop her.
I can replace the spoon.
I can reread the label.
I can refuse the plate.
I can leave the restaurant.
I can protect myself.
But what happens when I cannot?
Who will cook for me when I lose the control that currently keeps me safe?
People still joke that celiac disease is not real.
Friends sometimes sprinkle a little gluten on someone’s food to test whether the disease is real.
Restaurants call something gluten-free when they mean only that the ingredients do not contain gluten. The hands, cutting boards, utensils, fryers, and pasta water may tell a different story—and that part is not always communicated.
Busy cafeterias, hospitals, and assisted-living facilities prepare hundreds of meals for people they may never meet. Gluten-free protocols can seem burdensome or unnecessary, and steps get skipped.
So no, I do not believe a policy on paper is enough.
ADA protections do not stand beside the stove to ensure the policy is followed.
They do not inspect the spoon moving from one pot to another without concern.
They do not stop someone from deciding that one crumb cannot possibly matter because they do not understand how much it matters.
They do not guarantee that the person preparing my food believes celiac disease is serious.
This is not a fear of being difficult.
It is the fear of becoming dependent on people and systems that have never consistently shown us they understand what keeping us safe requires.
Who will cook for me?
It sounds like a simple question.
For people with celiac disease, it is a question about safety, dignity, trust, and whether we will still be protected when the control is no longer ours.
More Resources
I have written more about the practical and legal concerns in Celiac Disease, Assisted Living, and the ADA.
This is why understanding gluten cross-contact matters just as much as checking the ingredients.
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