An Emotional Day - We still have a long way to go

There are days when I can put on a smile and lightly joke about having celiac disease — days when the gluten mishaps, the guesswork, and the madness of eating out feel like something I just need to laugh about. But today isn’t one of those days. Today, the weight of it sits a little heavier, because every time I get sick from a meal I was assured was “safe,” the reaction I get is "ang arte naman". Then I just quietly think, maybe I am just being "maarte" .

Growing up Filipino means food is more than nourishment — it’s affection, identity, and love in the most tangible form. The warmth, the generosity, the instinct to feed — it’s the feeling of home and comfort rolled into a ball. But celiac disease doesn’t bend around culture or intention. It doesn’t care that someone tried their best. It only reacts to one thing: the presence or absence of gluten. And too often, that technical detail gets lost in translation, even when I ask in Tagalog, because I can.

Eating out with celiac disease can feel like stepping into uncertainty. I hope the bowl of soup wasn’t made with a stock cube or meal recipe mixes. I always hope the “gluten-free” dish wasn’t cooked in a pan that had soy sauce five minutes ago. I hope the marinade didn’t include something no one thought to mention. I hope because I really want to trust. I hope because questioning feels like doubting someone’s hospitality. And I hope because, deep down, I know the person assuring me na “safe yan” probably means it — but might not understand what safe actually requires.

Being treated “like family” is a double-edged sword. The kindness is real, the effort is heartfelt, but reassurance without knowledge is dangerous. A dish offered out of love can still send me home sick for days. No one is trying to hurt me. No one wants to get it wrong. But, intentions don’t stop symptoms and good hearts can’t override cross-contact which is what generally happens all the time.

Then there’s the emotional load of explaining my condition over and over again. I find myself gently clarifying why removing the breading doesn’t magically make a dish safe, or why shared frying oil is still a risk, or why “just a little soy sauce” isn’t harmless. I watch people’s faces shift — confusion, concern, sometimes even guilt and distance. And in moments like that, I feel torn between advocating for my body and not wanting to make anyone uncomfortable. It’s an impossible balance, and I constantly wish that it shouldn’t be mine alone to carry - most times, it is.

What people don’t see is what happens after the meal. They don’t see the stomach pain, the brain fog, the nausea, the exhaustion that follows for days. They don’t see the fear of wondering what went wrong — or the anxiety of thinking it might happen again the next time I dare to eat out. They don’t see how much courage it took for me to just sit at the table and trust.

Our food culture is rich, vibrant, and comforting — but awareness must be part of that culture too. Food can heal, but without understanding, it can harm just as easily.

If you love someone with celiac disease, your support is powerful. And if you’re someone with celiac disease trying to navigate this, please know this: you are not being dramatic, difficult, or demanding for protecting your body. You’re advocating for your health — and that is something you never need to apologize for.

Until that day comes, I will keep speaking up, keep educating. I will keep sharing my stories and feelings, not because it’s easy, but because we still have a long way to go.

Awareness is about creating a future where no one has to choose between culture and health, and where love shows up not just in the food served, but in the effort to serve it safely.

~Marge