# Telling People About Your Celiac Diagnosis

By Gregory Wilson · Excerpt from Chapter 3 of *Celiac vs Me*

You have just learned to read every label in the grocery store. You have just learned what malt is and what malt isn't. You have just learned why your house needs two toasters now. You did all of that work in a matter of weeks. Now you have to teach it. Out loud. Over and over. To everyone you love.

Before I go any further, I want to tell you the most important thing I have learned about this whole part of celiac life. **I didn't know what celiac was either, before I was diagnosed.** That fact is the most useful tool I have for the conversations I now have to have. The world is not being mean to you on purpose. It simply does not know yet.

## Four wrong things you'll hear, over and over

**"Oh, you have an allergy."** You don't. Celiac is an autoimmune disease — your immune system reacts to gluten by attacking your own intestinal lining. The damage happens whether or not you feel sick afterward.

**"But pasta in Italy is fine, right?"** For someone with celiac, wheat is wheat. Italian wheat is wheat. The lovingly-made handmade pasta at the family-owned trattoria is wheat. I am sorry. I wish this one were true.

**"Heat kills it."** Gluten is a protein. You cannot kill it. The wooden spoon that someone used to stir a wheat-pasta water two months ago has gluten lodged in the grain, and dish soap has not removed it. It sounds like paranoia. It isn't. It's chemistry.

**"A little bit won't hurt."** A little bit is precisely how the damage happens. The autoimmune response is binary — it doesn't measure the dose, it just notices the gluten. *I would love to. I really would. But for me, a little bit hurts a lot.* It is a kind way to say no. Most of the time it ends the conversation.

## Why I say "allergy" at restaurants on purpose

When you walk into a restaurant, the word you reach for is **allergy**. Even though it is, medically, wrong.

Restaurant kitchens have protocols for allergies. Those protocols exist because allergies (peanut, shellfish) can put a customer in the hospital. Saying *I have a gluten allergy* triggers that whole machinery: a separate prep surface, fresh gloves, dedicated utensils, an awareness on the line that this plate is the careful one.

Saying *I have celiac disease* sometimes triggers the same machinery and sometimes does not. Saying *I'm gluten-free* is the worst option — in many kitchens that is the language of preference, not protocol.

So at the restaurant, I strategically lie. "I have a gluten allergy." The server writes it down. The kitchen does the right thing. Then, almost as a habit, I add the word *celiac* in case the server happens to know what it means. A surprising number do.

## The best thing that happens

It has happened to me dozens of times now. A person's face will shift in a particular way when you start to explain. They'll cut you off, gently. *Oh, my sister has celiac*, they'll say. Or *my best friend's daughter*. Or *I had a roommate in college*.

You will know, in that moment, that you have been understood without further effort. Celiac is roughly one in a hundred. Same as redheads. Once you start identifying yourself, you discover that the network has been there all along.

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This is an excerpt from Chapter 3 of Celiac vs Me. The full chapter also covers the cumulative tiredness of being the person who has to explain at every meal, why disappointment lands in the chest every time a menu yields nothing safe, the thirty-second / ten-second / five-second versions of the answer for the nights you don't have it in you to give the long one, and the role of the spouse, parent, or close friend as the second translator who keeps explaining when you're not in the room.

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## Related chapters

- [The Day You Get the Celiac Diagnosis](https://celiacvsme.com/the-diagnosis/)
- [The First Weeks of Celiac Life: Rebuilding Your Kitchen](https://celiacvsme.com/the-first-weeks/)
- [Reading Gluten-Free Labels: Certifications, Ingredients, and Hidden Gluten](https://celiacvsme.com/the-aisles/)
- [Eating Out with Celiac: Trust Signals, Dignity Signals, and the Bridgeport Ribeye](https://celiacvsme.com/the-table/)
- [Celiac Travel: Road Trips, Hotels, and the Parking Lot Moment](https://celiacvsme.com/the-road/)
- [The Holiday Calendar with Celiac: Thanksgiving, Birthdays, and the People Who Love You](https://celiacvsme.com/the-calendar/)
- [The Body Underneath: Bloodwork, Healing, and the Real Goal](https://celiacvsme.com/the-body-underneath/)