Confessions of a Celiac: What Marcia Polas Wants May Shock You

This is the 2nd in a four-part series on dining out with allergies; stories to support an upcoming piece for Serious Eats. For more, read an interview with Chef Lynn Bound. Other parts will be updated upon posting. 

Photos Zach Andrews. Using them without his permission is illegal... and mean.

Photos Zach Andrews. Using them without his permission is illegal… and mean.

I met Marcia Polas of Polas Pilates via a mutual friend on Twitter; she has Celiac disease, and at the time I had a busy blog that focused on gluten-free and dairy-free recipes, stemming from my 20-year relationship with Lyme disease. We got to chatting online (she’s been fundamental in helping me with some Lyme-related pain issues), and when she visited New York we spent many hours across a table together, which blossomed into a bi-city friendship.

While my relationship with food is an intimate and serious one, unlike Marcia I won’t die if I eat something I’m not supposed to.

For an upcoming piece, I started researching chefs, restaurant managers and servers from around the country, pooling their opinions on what it means to serve those with food restrictions great and small. And, while on a friendly chat with Marcia, I asked her for her thoughts, too. Rarely do I meet someone with allergies who takes them both as seriously and as non-dramatically as Marcia; she knows her illness inside and out and what situations are safe for her, but doesn’t wax dramatic about it to those it doesn’t concern or force anyone else to take responsibility for what she eats.

There are many moments with Marcia that stick with me emotionally: hearing how hard it’s been for her family to adapt to her diet, not recognizing the severity of her illness; seeing how something as simple as gluten-free Linzer cookies makes her face light up so much so that she’ll delicately wrap them for a long flight home from New York; my own joy in being able to bake something for her as a present when visiting her in Denver.

But, instead, here are her words; the bulk of our conversation on what she thinks on dining out with Celiac disease. Some of her opinions might just shock you a tiny bit.

Confessions of a Celiac:

What Marcia Polas Wants May Shock You

 

What frustrates you the most about the allergy eater / restaurant relationship?

 As a “representative Celiac” I get very angry at the idea that any Celiac thinks it’s not their own job to keep themselves safe, and that they’re going to be comfortable and safe when someone is willing to feed them outside of their own home. It’s my responsibility to vet the restaurant, to speak to my server and to speak to the chef in language continuously until I believe we’re on the same page; until they understand me and I understand them, until I feel safe to put something in my mouth. It’s my job to ask those questions.

And what do you do if you don’t feel on the same page?

Because I am severe Celiac and could die on the spot if ate gluten – because it’s such a severe response – I will get up and walk out of a place if I don’t feel they’ll keep me safe. That said, I know all the questions to ask; I explain fully and quietly to my server what my issue is, and then ask questions like, “I would like to know what you’re comfortable feeding me” or “Are you comfortable feeding me?” I think because I ask so many questions, I’ve always felt very comfortable with “I’ll have to get up and leave” or “I feel comfortable with them feeding me.”

How do you get people to take you seriously, when so many claim gluten issues now?

It’s knowing the questions to ask. I have to ask things like “is it a shared fryer?” As soon as you start asking questions like that, people understand that you’re not making a life choice, you’re making a choice to stay alive. “I go into anaphylactic shock with my first bite.” I will not go to a new restaurants on a Saturday or Friday night, someplace I haven’t been before. I’ve had a lot of people say to me, “We can do anything, don’t worry about that.” But I don’t want to be the hardest thing that happens to the line on a Saturday night when they’re already in the weeds. I stick to the places I’ve been to before at the busiest time periods, and I make a phone call and visit new places when it’s not the busiest time, to make sure they feel good about feeding me.

Do you find it easier or harder to dine out now then, say, five years ago?

I think it’s easier because more people are aware of it, so it’s easier to look at a menu. But any Celiac who just orders the gluten-free option without asking any questions? I don’t have a choice but to take mine exceptionally seriously. But that said, none of us who have Celiac should look at a menu without talking to the team to make sure they can keep us safe, and feel comfortable doing that. But it’s our job.

And that’s what makes me very angry; we seem to be attacking the restaurant industry and the food industry for not giving us gluten-free options, and for not giving us the ability to walk in with our weird little food allergies, and have everyone drop everything to cater to us. There are a hell of a lot of whole foods out there you’re not allergic to; eat fruits and vegetables and meats and leave the sauces off. Ask the station to prep for you. It shouldn’t be that hard! I get very irritated that it seems the whole world should turn on its head because we have Celiac disease. Learn the questions to ask.

How do people do that? There’s a lot of misleading information out there.

It seems to me we don’t have a great source to really get the inside scoop on all the possible things that could go wrong. It would be terrific if every time that someone got diagnosed with Celiac disease, their doctor handed them something like they would with Diabetes or other diseases that are understood. I had to learn that with the caramel coloring in cola you’ve got a 50/50 shot that it’s got gluten in it, from whatever they use in the coloring. MSG has gluten. I’m a Celiac who responds to even the smallest amount of gluten, so a red wine vinegar could be safe for me or it couldn’t depending on the kind of wine that was made with or the barrels it was made in. I avoid red wines unless they’ve been sourced for me.

60% of all Celiacs have the same inability to digest one of the proteins in oats, so a lot of oats are certified gluten free, but a lot Celiacs could have the reaction. Mustard! I only use Whole Foods Dijon mustard, because it’s made with apple cider vinegar. I almost took myself out a year ago with mustard in my own house! You’ve got to read everything you can, and talk to people who were diagnosed years ago. Those are things you have to learn. It’s my job to keep myself well and to know my disease better than any chef would, so that I can ask the right questions.

Was there something particularly hard to learn?

Something that I had to get over was that when something goes wrong, I get very embarrassed, and I really have to get out of there. If it’s cross contamination and I think I’m not going to need an EpiPen – I’ll just need a Benadryl and be sick for a week – if I’m starting to swell, I know within two bites. And so I don’t say anything, and just get the hell out of there because I’m embarrassed. I call the chef the next day and tell them what happened so we can figure out what went wrong and what they can do about it. If they guaranteed their cooking gluten free for me, instead of just never going back there I need to help tem figure out what went wrong, and in a non-accusatory fashion. And at the same time, if I do call them and explain it to them, they need to recognize and understand that I was frightened, that I needed to get home and make sure I was able to get home and be okay, and then I could deal what happened. But my first response is a little bit of a terror response; I don’t know what’s going to happen next. I’ve learned that lesson; that I need to communicate versus never going back to that place. It wasn’t intentional; but if something goes wrong and they were trying to take care of me, they need to solve whatever went wrong. I’m going to be okay. But we are in it together.

What makes an experience feel above and beyond wonderful?

I ate at Beuchert’s Saloon in D.C. The food was so good, I was dying to go back because it was such a great meal, and they were so unbelievably lovely, remembering everything from my first visit. They did everything, right down to that they wanted me to have the polenta so they did it in a separate pan. They’re amazing, and I can’t wait to go to D.C. to eat there again. It’s delicious. But that gives you the idea of the kind of conversation I have with a waiter before I eat someplace.

And the opposite?

A month ago I had a cross contamination from a place I’d never been to before, but a place that was a big deal to a friend of mine. They made such a big deal about making something special to me, and I really wasn’t that hungry and just wanted a bowl of their soup. They promised the soup was gluten-free, but came with fried scallions on top, which the waiter said they did separately for me. I had two bites of the soup – not even any of the scallions –and immediately my throat closed up.

My response is going to be different every time. I had an upset stomach for a few days, but I know after cross contamination I don’t eat anything that has to be roughly digested; no vegetables, fruit or meat for a week, nothing my digestive system needs to work hard to digest. I had the rawest, most painful throat for days afterwards; the worst it’s ever been. They wanted to make scallops and a special dish for me, and I wasn’t that hungry, and I didn’t want anybody to go to any trouble. If I had allowed them to go out of their way for me in the way that they wanted to, I probably would have been fine. Isn’t that interesting? I shot myself in the foot for that one.

What did you learn from that?

You trust your gut. I better know everybody who’s in the back if I’m going to eat something fried; that’s all there is to it. Unless it’s something like Udi’s, that has a non-shared fryer for their fries. That said, I still have the conversation when I go there, and my server goes in to make sure that nothing goes in that day that shouldn’t have. Lark Burger doesn’t share a fryer! I can have fries there any time I want!

What’s the takeaway from all this for you?

I’m still taking a risk, every time I eat outside of my own home; I have to recognize that. I’m taking a risk that something can go wrong, but I still want to have a normal life. I love food, and I’m passionate about it and the people who make it. There aren’t too many people who are comfortable feeding me in their own home, and I don’t get invited out a lot because they’re worried about making me sick. I avoid holiday parties where there’s going to be a buffet or a potluck; I have to bring something for me to eat and be willing to eat something other than everyone else. I don’t know if they stuck a knife in something that had been in bread earlier in the day; it’s a very big deal to have someone feed me.

So one of the things that I’m very specific about that I joke about it afterward is  that I look the server in the eye;  “We need to make eye contact; I’m going to die if I eat gluten. I will die here. This will kill me.” But I always make sure that also when I leave a place I look everyone I can in the eye, thanking them for feeding me and keeping me safe. I ask the waitstaff to thank those in the kitchen for feeding me and keeping me safe. I don’t know that chefs and waitstaff really grasp that part of it. That when they’ve agreed to feed me – whether it’s something as simple as the least elegant, simplest plate of food, or if it’s something spectacular that I could never make myself – the fact that they’re willing to go through that effort to nourish me and allow me to go out with friends, and get what a shared meal gives us… I don’t think they grasp what they’re doing, what they’re giving me, that it’s a huge gift I don’t take for granted. It’s a big deal for someone to take your autoimmune disease seriously, and to take care of you, and you should be accordingly grateful and take care of that.

Being left out is the hardest thing about this disease; it doesn’t have anything to do with fruits and vegetables and proteins – thank god I can eat dairy – it’s not what I have to give up. It’s the separation. With my Italian-American upbringing it’s about sharing a meal, and I miss that. The friends that I have that will go out and order a gluten-free dish, and have their dish gluten free so that we can share; that’s a gift. That’s me getting to have every part of what sharing the experience of having a meal with someone is. That said, sometimes I like them to order the thing I can’t have so I can watch them eat!

 

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