Chef Gavin Kaysen: "I Have Celiac Disease"

{This is the 3rd in a four-part series on dining out with allergies; stories which supported a piece on Dining Out with Allergies for Serious Eats. For more, read I'm a [Food] Writer with [Food] Issues, an interview with Chef Lynn Bound and Marcia Polas' Confessions of a Celiac.}

With a quick internet search, I find what I'm looking for: chefs around the country who have Celiac disease.

There's a pastry chef in L.A. who makes towering celebration cakes, her body elbow-deep in cake batter she can't eat. There's a chef in Chicago who offers up a few special treats for those with gluten issues. Scores of others--mostly private chefs--have changed their career trajectories after a Celiac diagnosis or other digestive issues. But until recently, none of the 130 or so I've personally worked with had ever brought their own gluten issues up with me.

I interviewed  Chef Gavin Kaysen for my column a while ago now, and see him all over town at various work-related events. I recently interviewed his pastry chef, Ashley Brauze, for my weekly column. In celebration of that column's recent ending, my photographer Brent and I treated ourselves to a meal at Cafe Boulud, and Gavin and his team prepared a beautiful dinner somehow prepared start to finish without gluten or dairy so that I wouldn't get sick.

Afterward, we caught up for a few minutes, and Gavin asked if I had Celiac disease. Nope, I said; Lyme disease, but gluten has been tough for me to handle for about 2 decades because of it*.

"Well, I have Celiac disease," he said. "So I totally get it."

Gavin's never come out and "confessed" his having Celiac to the food community, specifically. When I asked him why, he didn't seem to have a clear reason; he's had it for so long that the rise in awareness didn't quite strike him dramatically, and for a long time he just had a handle on how to work around the disease in his personal and professional life.

People with gluten issues are often scorned by non-allergy-eaters and put up on pedestals by others with them, who watch like hawks to make sure others never slip or falter. But Gavin is a testament to working with his own body and owning up to his own decisions. Here, in his first "coming out" interview, he tells me how gluten affected him as a child, a chef, and a parent.

*Ends up, I get a Celiac diagnosis a little over a year later, too.

Chef Gavin Kaysen: I Have Celiac

"Every single day we cook and take care of people. We have to figure out how to take care of ourselves, too."

When did you find out you have Celiac disease?

I was eighteen. My mom tells a story about how when I was really young I had these really skinny arms, really skinny legs, and this massive bloated stomach, eating peanut butter and jelly sandwiches. So at one point she stopped feeding me gluten 100% for two months, and I grew an inch and a half and gained good weight, not stomach weight. And ever since then she kept me on a sort of low gluten diet.

When I went to college, I’d drink beer and really start to notice that something was wrong - I’d get violently ill from one beer. I remember calling my mom with “something’s not right,” and she was like, “Okay, next time you come home we’ll go to see this allergist.” And so that was when I was diagnosed with Celiac. I had no idea what Celiac was and I basically didn’t listen to what they told me to do, because I always sort of knew what it was for me anyway. So from 18-30 I didn’t really pay attention to it at all, but as I got older it increased and got more painful. Bagels were the hardest on my stomach; I don’t really know why. By day five or six of eating bagels for breakfast I couldn’t eat at all, because my stomach was ripped to shreds.

Then I had my appendix taken out two years ago, and after that my stomach became hypersensitive to everything; I don’t really know why per se. I went to the doctor and she said basically I’d eaten so much gluten over the years that the cilia in my stomach had shredded away, but that it’d grow back if I stopped eating gluten for a long time. I know now that if I eat a lot of gluten I’ll get sick and really tired because my body is trying to digest something that it can’t.

How did that shift change you?

It’s probably affected me more now than ever before, and makes me think differently when I cook. You’d be surprised at how many people cook gluten free and don’t know it; I can go to a restaurant and pick out all gluten free dishes and know they’re gluten free based on what I choose. But I don’t think a lot of people know how to maneuver around it. I have never really come out blatantly and said, “I have Celiac.” Well… now I am.

Why haven’t you come out and said it before?

I don’t know. Just because I feel… One part is maybe because I don’t want to miss something that I can try, or taste. The other part is just that I’m so used to cooking for people with allergies that I understand what it means when you have an allergy, since the reality is mine is real.

We have a regular here, a woman with a very serious gluten allergy, and we always take very extra special care for her as a result. She sent me an email one day saying she got really sick after eating with us and that it was our fault. I promised her we didn’t make her sick – I plated every dish for her – but I’d look into it and I wanted her to look into what else could have made it happen that day, so we could really figure it out. I really wanted to know. I looked into all the things we cooked that day to see if there was any cross-contamination, and couldn’t find anything, and she called later to say that there was gluten as a thickening agent in her lipstick, so every time she put it on she was making herself sick. It was amazing to me the idea of gluten extending beyond food.

You told me the other night that you still taste things at work when you need to. How does it affect you?

When I’m tasting a little of something, not that much. But it’s about picking and choosing my battles; I avoid tastings when I have to. There’s a bread tasting at Daniel in a few weeks, and I’m not going to go. Last time I just sat there and smelled everything. I have to pick and choose my battles. If a cook needs me to taste barley to make sure it’s cooked okay, I’ll take a tiny bite, and I can do that. But there’s no way I can taste every bite of barley on every plate; I give that to a sous chef. Now I challenge Ashley in pastry to do a gluten-free dessert. Daniel’s daughter has Celiac too, so we always try to experiment for when she comes in to eat. I made a gluten-free pasta one day, and asked Daniel to taste it; spaghetti with muscles and shrimp and herbs in a fra Diavolo. He said it was delicious, and then I told him it was 100% gluten free. We worked long enough to make sure the texture was right; I think that’s what you miss the most with pasta and bread.

We both know how to read menus in a way that makes it pretty clear what we can and cannot eat. How much responsibility do you think is on the diner in that circumstance?

I don’t think a lot relies on the diner, because I don’t think they can know everything in a dish since we don’t put all ingredients on the menu. And I’ve done that, too, ordering something I think is safe and then there are croutons on something or whatever.

I have a friend in Florida who, if someone says they have a severe allergy, will go out to the diner and speak to them personally, to see how they can help them through their meal, which I think is a great alternative because then there’s really nothing lost in translation; it’s straight from the diner to the cook. The hard part is that if I did that every single time, I’d be in the dining room a lot. It’s a very tough balance I feel; no matter what, you have to take every allergy seriously, so you have to train the team and cooks about gluten and nut and shellfish allergies, opposed to taking the mentality of, “Oh, they’re not allergic to it, they’re full of shit”. If you say that in the kitchen the cooks are going to think that they don’t have to take it seriously.

What about those who don’t have an allergy and say they do? Those experimenting with a gluten-free diet, perhaps?

Everyone kind of goes through those fads, but it’s our job to basically maneuver the food around it. We get a lot of gluten requests – it’s the most popular allergy right now. But a lot of the menu is designed to be gluten free (probably because of me wanting to be able to eat it!), so when people come in they can have 80% of the menu already.  Even the risotto balls we have can be made gluten free, with gluten free breadcrumbs. You can basically get the exact same experience now here.

Do you see having to come up with things like gluten-free breadcrumbs as a bother or a fun challenge?

It gives me an opportunity to play more outside the box. Even with baking; how can I make banana bread that’s not too heavy? My wife made corn muffins the other day that were delicious. Our kids love crepes; they’re so good! And I feel like it’s just a really great way to educate yourself, especially when you’re forced to. I want to have pancakes on Sundays with my kids; so how can I participate? Every once in a while I’ll come across an idea for a gluten-free recipes and think to myself ‘how can we manipulate and change that sort of heavy, starchy taste?’

Is there anything you want to see change, a direction you hope this goes in the future?

To me, one of the most important things is at the end of the day we’re built to please the guest. And the allergies are not going to go away. Even if it’s a fad it’s not going to go away, because the people that do have an allergies or a disease will still need to have alternatives, and I think it’s an opportunity for us.

I had a great meal at Betony where Bryce asked if he could cook for us, and he didn’t skip a beat when I mentioned that everything had to be gluten free for me. That should happen more often, but not just in fine dining or “middle” class dining. More diners should be able to have that opportunity. At the Four Seasons I can get gluten-free English muffins for Eggs Benedict, and I love that, because at most hotels you can’t get anything; sausage and fruit maybe.

Think of any place that has a great burger; for us, it’s like, “Oh, I can’t go.” I’d love to go to Shake Shack or In and Out, but I can’t, there’s no reason to. There’s got to be something like a potato roll, something that works for those kind of places. I get that it’s an investment and an expense, and I’m not asking everyone to change, but at least hotels should change their service, because they have so many people that stay that it’s not just a hospitality thing, it’s a huge loss of revenue. I think everyone needs to jump on the bandwagon a little bit. It’s not going anywhere.