DISCLAIMER: this is my own personal opinion, based on my own personal experience. While I frequently read books and forums on celiac disease and gluten allergy/intolerance/sensitivity, I am not a doctor nor a nutritionist. If you are experiencing symptoms that you think may indicate food issues, I would urge you to see a doctor and possibly also a nutritionist, despite what might seem like discouragement below.
Philadelphia seems to be buzzing these days about an article written by one the city's favorite restaurateurs, Marc Vetri. Vetri rants about gluten-intolerance in the article, or, more specifically the people who claim it. I will preface my response by noting that he does recognize celiac as a more serious issue and is not aiming the article at those afflicted by the disease. Yet, I still could not help being rubbed the wrong way by it. After waiting tables throughout college, I understand that certain customers are just more infuriating than others. But I also think that those with food allergies or intolerances are facing a bigger hurdle than someone who thinks cheese is making her fat or that spinach is too slimy to eat. That hurdle, in a nutshell, is information.
What's Wrong With Me?
We are living in the age of allergies. At lunch the other day, I was
with three other people, two of which had varying levels of gluten
sensitivity, one had a dairy sensitivity on top of that (I, too, am
"avoiding" dairy), and the fourth was allergic to tomatoes. At a party
the next day, multiple people had crab allergies. Kids these days are
not allowed to bring peanut butter to school for fear that the dust will
set off a classmate's severe allergy. With all the focus that has been put on allergies (this most recent gluten article is not the first ridiculing the "trend," nor will it be the last), one would think that this came with a wealth of knowledge. One would be wrong.
To start with, allergies are a strange beast. Most nutritionists and internet resources say the best way to figure out if you should not be eating something is to systematically eliminate and reintroduce common allergens into your diet. If you feel less cruddy the week you are off gluten, well, then you might be possibly gluten intolerant/allergic/sensitive. Yes, there are tests to determine some allergies and intolerances, but in my experience, doctors do not recommend many of these, short of the celiac blood test, to the masses. Many people, myself included, may feel like they're taking stabs in the dark about what is actually making them feel so bad. And I have an autoimmune diagnosis, so I have MUCH more information than most people trying to figure out what's wrong.
So...What CAN I Eat?
Once someone figures out what they are allergic/intolerant to, then comes a whole maze of information on how best to deal with it. While I am an extreme case, I think my experience can be enlightening. I am still figuring out everything that comes with celiac disease, after being diagnosed 4 and a half years ago. Here is a list, by no means comprehensive, of things that I learned had gluten in them that you might not expect: toothpaste, soy sauce, ketchup, fries that have been fried in a shared fryer, certain wines, vitamins, cosmetics, spices....the list goes on. All of this can be very overwhelming, especially for those without a photographic memory. Celiacs are less likely to have that photographic memory because "brain fog" is a common symptom of celiac, leading to memory loss and lack of focus. Even after all of my reading, I frequently end up googling ingredients on my phone in restaurants, grocery stores, and pharmacy aisles, thus contributing to the downfall of a normal dinner experience, from some peoples' perspective.
Then comes the information on how best to manage the disease. Should I stop eating soy and legumes too? Should I go completely paleo? Should I try to spot and eliminate my other food issues, or go on a rotation diet to prevent further sensitivities? What the heck is a FODMAP? What supplements should I take, if any? How do I heal my body after all of that damage and still go on living a normal life? I have done a significant amount of reading, particularly on celiac and holistic living forums, and it seems like everyone has a different answer. Some tell me I should not worry too much, and that I can eat out at restaurants like a "normal person". Others go so far as to dry their own spices to prevent accidental glutening. And here's the thing: they are all right, for themselves. Everyone has to figure out which path to take, perhaps with some nutritionist/doctor support, but their own path nonetheless.
While the above questions are more specific to celiac disease, I do not pretend that I am the only one being barraged by information. It seem science still has not decided on the health effects of eggs and coffee -- either they are going to extend my life for 20 more years or kill me tomorrow. Vetri's article says "You're most likely listening to some half-truths written in a book by
some doctor who is more concerned with the width of his wallet rather
than the width of your waistline." My response: how do we know? How do I pick the book or the doctor that has the whole truth and is looking out for my best interest? I try to pick information from people that give it out for free and seem to be the most trustworthy. Yet, these days, it seems that everyone is struggling with incomplete information.
Here, I have to respond to Vetri's anecdote about the woman who sent back her risotto dish. Despite the waiter telling her it was gluten free, she refused to eat it and flagged down Vetri to complain. While some people may think this is a funny story, I could not help but imagine what her thought process was like. I sometimes get orzo, risotto, and wild rice confused. They are all rice-looking dishes but orzo has gluten, and some rice blends may as well. I imagine this woman had a similar problem as I did. With my apologies to the hospitality community, I have to point out that sometimes the waitstaff is not knowledgeable. I have definitely become sick after a meal where a waiter swore up and down that the dish was gluten free. I am sure the folks at Vetri's restaurants are not this ill-informed, but that is just another area where we have incomplete information. How do I know that this particular waiter has been trained properly and that he/she remembers all the complex information about what is and is not gluten free? How do I even know that I am being taken seriously, particularly with all of the jokes that are made about gluten-free eating? While I am not the type to send back a dish once I order it (I would have googled to make sure I knew what I was talking about), or complain to the restaurateur about a dish, I do not think this woman should be ridiculed for her lack of knowledge. (However, the fact that she drank a beer after does open her up to more ridicule for sure).
An Important Side Note on Emotions and Eating
For a moment, I will talk about how incredibly emotional all of this is. My celiac journey has been a series of the seven stages of grief. I went through all the stages for the diagnosis itself, then I repeat it every time I find out a new aspect of celiac I do not particularly like. The denial phase lasts the longest for me. That stage is even worse when you do not have a concrete diagnosis, for sure. A typical thought during denial might be: "a little gluten/cheese/tomatoes/insert your own allergy here won't really hurt me." I am still in denial about some things, mainly because of my giant weakness for french fries. The pain/guilt stage, the anger/bargaining stage, the depression, and hopefully, the upward tick and coping stages -- they are all there, every time.
Let us also not forget how many emotions food carries with it. People commonly talk about "eating their emotions" but it is not only sadness or stress that leads us to food. We celebrate with food, and potentially have very happy memories with certain foods. Whenever I see a great looking bowl of macaroni and cheese or cooked apples, I am reminded of the many happy hours sitting around my great-grandmother's table, eating her southern home cooking.
Vetri seems to forget this in his article. He discusses, and dismisses, the idea of making common gluten-full foods in a gluten-free fashion. And while Vetri would never serve something "shrimpy" to a person with a shrimp allergy, many of the gluten-full foods that we can no longer eat are known as comfort foods. Who does not have good memories with a plateful of pasta or a hot slice of pizza?
Where Do We Go From Here?
So here we are, as a community of people who feel cruddy sometimes/a lot/most of the time. We are not sure exactly what we are allergic to, in what foods it may or may not be, and what to eat instead of those foods. We might be missing something that we used to be able to eat, or confused between a lot of concepts that seem the same to me. So here's my plea: give us a break. We are all trying our hardest to eat healthily and feel good. Eating has a multitude of emotions attached and it is hard to be denied something you used to love. Maybe instead of making gluten the punchline of your jokes, take a step back and realize how hard it is to make reasoned decisions about what, when, and how much we eat. Aren't we all just trying to figure out how to do what's right for our bodies?
To be honest, I think many of these thoughts had been stewing in my mind and heart for a while, and Vetri's blog (which he admits he titled provocatively, to entice readers) just provided the impetus for me to write them out. My opinion of Vetri's restaurants, or the good he does in the community, has not changed. I just felt that many stories did not address the challenges that many people face. I love food, and sometimes (many times) food does not love me back, and that is, quite simply, hard. That's really the point here. A quote comes to mind, which is apparently oft-misquoted or misattributed. Paraphrased from the original Ian Maclaren quote, it says: "Be kind, for everyone you meet is fighting a hard battle." So that's really the moral of the story here: be kind.
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