My favorite t-shirt has “Gluten is not the Devil” blazed on it in Italian. It’s soft, and the curvy cut is quite perfect, and the pig on it looks like there’s nothing that will bring him more happiness than the bowl of gnocchi he’s about to devour. Flavour Gallery sent it to me after a chef-friend saw it on Twitter and alerted them that I had to have one.

I’ve been on a gluten-free diet for twenty years.

Contrary to popular opinion of many gluten-less, I still don’t think it’s the devil.

My story is rooted in Lyme disease, which means that while I don’t have a life-threatening reaction to gluten like someone with Celiac does, any eating of it (and some other things) will make me relapse. Hard. Like, I was in a wheelchair as a kid, in college I blacked out regularly in class and had violent anxiety attacks, and the last flair had me out of work and home bound for a year. Using food as one way to control illness is a serious thing for me and many, many eaters out there. And gluten is one part of my diet.

Yet while more people know what gluten is now (which, trust me, almost no one did ten years ago) and though we can get a multitude of allergy-free, dynamic ingredients much more easily, that doesn’t equate to easy dining for those with food intolerance. Yes, more restaurants understand food allergies and take them seriously. But there are also a lot of people who claim to have allergies and intolerance yet don’t seem to quite understand what they mean, or how ordering habits affect kitchens and others with serious problems. And, yes, there are those who go “gluten free” for a week or five that challenge the patience of many a server or line cook, inspiring others to question the credibility of gluten intolerance in general.

As a writer who works primarily with chefs, I see the way kitchens run. For every ticket that comes in with a modification or allergy, a cook needs to adapt. For every ticket marked with a serious allergy, some things change on the line that take precious time and concentration, something in short supply on a busy Saturday evening. At the Cafes at MoMa, Chef Lynn Bound has her cooks change gloves, wash their stations and sanitize their equipment when an allergy comes in. If one is deathly, she’ll have it made by a sous chef in another kitchen where ingredients and time-management are a bit more controlled. Her dedication is above and beyond what most can provide because, she says, “It’s easy to cook things with cream and butter and make the usual dishes, but you should want you challenge yourself to meet where we are as a society.”

So, as a society, food intolerance and allergies are commonplace now. I’m not asking to debate who is and who isn’t justified to say they have problems with gluten or any other food, because in my 20 years with an illness I’ve come to the very strong personal belief that each of us chooses for ourselves how we treat our own illness. Do I believe in Celiac disease and the science behind it? Hell yeah. Do I believe that many people feel respite from chronic symptoms when they go off of major common allergens, like gluten, dairy, soy and nuts? Of course. But do I also worry about those who look for a quick fix for a symptom, get up on a soap box when they discover something that works without the experience or education to back up their findings, and then make things harder for others out there? Triple hell yeah.

In my twenty years, triggers and symptoms have come and gone, and sometimes come back again. Right now I’m going through a very specific testing process so I can accurately measure any new inclusion of a food and its inflammatory reaction in my body. Symptoms that were abated by choices years ago are back, which means something else is going on. I’m responsible for figuring this out if I want to feel differently. I can read as many articles or blogs or see as many doctors as I want, but ultimately my relationship with my health is between me and my body, and it’s my job to be as responsible with it as possible.

Years ago, I wrote about this more often and from the professional aspect of my writing life (I purposely keep this site for personal expression, and even this has waned drastically as other work has taken precedence). But I got burned by what feel is a very exclusive group of writers, readers and eaters, who feel their opinions trump those of others, in an internet world that lets us thrive on anonymity or inflated self importance. Yes, I’m adding to the cacophony by writing about this. But I never have nor never will tell anyone I am an expert, role model or voice for a specific illness or food issue.

Circling back to the point here, I was asked to write an article on dining out with food intolerance as I have an extensive history both with not eating certain foods and with writing about chefs and restaurants – well over a hundred to date. For the piece I don’t rely solely on my own experiences at all – my editor had to push me into including more of my own voice, actually – instead interviewing chefs, servers and restaurant managers around the country to find out what they find helpful, annoying or dangerous about serving guests with food issues. Personally, I learned a lot from their response, and am heartened by the comments left by readers and buzzing around on Twitter.

This is the first time I’m posting such a piece on this dusty little site, and I promise when my health is a bit better I’ll be back to posting recipes, hopefully with more of an anti-inflammatory focus, as I don’t think I’ll be indulging in crazy sweets much for a while until I get some things back on track in my body. But until then, I invite you to read the final piece and the support pieces I put out while working on it.

And I’d appreciate your sharing your own experiences and thoughts as well.

In support and community,

– Jacqueline

WHAT YOU SHOULD KNOW ABOUT EATING OUT WITH ALLERGIES: on Serious Eats

I’M A (FOOD) WRITER WITH (FOOD) ISSUES

CHEF GAVIN KAYSEN: I HAVE CELIAC DISEASE

CONFESSIONS OF A CELIAC: WHAT MARCIA POLAS WANTS MAY SHOCK YOU

DINERS WITH ALLERGIES: CHEF LYNN BOUND TAKES YOU SERIOUSLY