My medically necessary diet is not your fix-all fad diet

I got my diagnosis for wheat allergy at an interesting point in food industry history.

Gluten had been a buzzword for years by the time I had to concern myself with it, it had actually become something of a joke by the late date of 2012 (at least in Southern California where people are raving about raw, vegan, macrobiotic, superfood, gluten-free, low GI diets years before the rest of the country catches up with our super-fly soy based economy.) The hip California kiddies were joking and eye-rolling about Gluten-free foods in 2012 because by then they had made the great leap out of the health food stores and into big box stores. When your world-changing, life-improving, paradigm-shifting diet has made its way to the shelves at WalMart, the magic is gone and it's just another prosaic buzzword that cynical food manufacturers use on packaging to move a few more units a month. The diet hipsters were just like, so over it, dude. Like sodium, fat, trans-fat, and sugar, "gluten" became a word that had "no" tacked in front of it or "free" stuck behind it before being shoved in front of consumer eyeballs on every shelf of the grocery store.

One of the reasons behind the recent, extra heavy influx of g-free (a moniker so trendy and buzzworthy that I avoid saying it aloud) food onto supermarket shelves is a book. A popular book. A New York Times Bestselling book. In 2011 Dr. William Davis published Wheat Belly, a diet book furiously crusading against the evils of wheat; detailing its sinister, addictive properties; informing the common man that there is a cure for insomnia, schizophrenia, acid reflux, migraines, hay fever, PMS, arthritis, asthma, and an extensive list of other ailments - removing the wheat! Dr. Davis also promises that readers will lose a bunch of weight and stops just short of promising super powers or age reversal.

But, while wheat is evil according to Davis, you can't lose the weight or shed your chronic, debilitating disease just by cutting wheat out of your diet - you have to cut lots of things out of your diet and follow his meal plan to succeed (success is debatable: in large part the meal plan does not restrict calories enough to efficiently lose weight and many of the "cures" can be attributed to minor weight loss or the placebo effect) at Davis' "scientifically proven," "clinically shown," "well studied" wonder diet. The bigger problem is that most of Davis' "science" is based in half-truths, shoddy research, or is just plain wrong.

One of my favorite examples of false claims made in the book is Davis' claim that people who are wheat-free actually get more fiber than wheat-eaters: the average American eats 12-15g of fiber per day (25g is the recommended amount), the average wheat-restricted Celiac patient gets 3-6g; one cup of Post Shredded Wheat has 6g of fiber, whereas one cup of carrots (Davis wants you to cut rice (4g fiber per cup), oats (5g fiber per cup), and other grains) has 4g of fiber. I will let you know right now, as someone who is struggling to get enough fiber to make my gut happy, that it is a hell of a lot easier to eat two bowls of cereal than it is to eat three cups of carrots.

But in spite of all the questionable science and provably false statements, Wheat Belly has a die-hard core of fans and followers. And even before Dr. Davis and his sloppy science came along the gluten-free movement was gathering steam in a headlong rush of celebrity dieters and everyday fad-chasers, people always looking for the secret key, the magic bullet that would grant them health and slimness and long life.

The food industry is paying attention - in 2012 consumer in the US $7 billion dollars spent on gluten-free foods, a price tag that has made food manufacturers sit up, take notice, develop and market foods to soak up some of that market share. Some of this spending is attributed to an increasing number of Celiac and gluten intolerance diagnoses but at least 50% of gluten-free food is purchased by people who have no medical reason to cut gluten out of their diets.

And this is where I start getting angry.

I have to eat gluten-free food. It is not a choice for me. Even with the mad dash to put g-free foods onto store shelves there aren't a lot of options available, and that number is already shrinking. A year ago I was able to eat 4 types of Chex, Cocoa Pebbles, and 3 different kinds of rice cakes. In the last year sales dropped on Chex's gluten free line and so distribution has been reduced: I can still eat those 4 kinds of Chex, but finding them in stores has become difficult. Cocoa Pebbles has had its ingredients changed; it was never marketed as gluten free though scrutinizing the label showed that for a few months it didn't have the Malt Flavoring that is back in its ingredients list. Two of the companies that made my rice crackers went out of business, though I can still depend on Quaker Oats for my 35 calorie, 0g fiber, brown rice snack. It's disheartening to realize that I've only been dealing with this issue for a year and already my choices and options are disappearing.

Why? Why are these foods disappearing? Because $3.5 billion of the g-free market is realizing that cutting gluten out of a diet doesn't help you to lose weight if you're just replacing Cocoa Puffs with Cocoa Pebbles. Plain rice cakes are unappealing unless you have no other choices. Cinnamon and Chocolate Chex don't taste good in a party mix and are less appealing to kids than the wheat-based alternative cereals. Non-Celiac, Non-Sensitive, and Non-Allergic people are jumping off the g-free, wheat-free bandwagon and hopping onto another trend. GMO free is already overtaking us and we're still spitting out the Local and Organic bandwagon's dust. And all of this is happening because gluten is NOT A MAGIC BULLET. There are no magic bullets - weight loss fads and fantasy schemes come in and for a while foods that benefit people with medical conditions (low sodium and low fat benefited heart patients, low carb and low sugar helped diabetics) are widely available, but eventually dieters (who always make up a larger portion of the population than patients) realize that low fat yogurt hasn't helped them shed 70 pounds, that Atkins bars haven't halved their love handles, and that gluten-free biscuits haven't gotten them bikini-ready. When those fads fade the grocery stores eventually stock fewer and fewer of the diet specific food and people with medically necessary diets have to wander back to the limited options and higher prices of the local health-food store.

A gluten-free or wheat-free diet is not for everyone. It won't guarantee weight loss, it won't help you build muscle, and it won't cure the ridiculous list of ailments that Dr. Davis wants you to believe it will. Cutting gluten or wheat out of your diet will reduce your symptoms if you have Celiac disease, a gluten sensitivity, or a wheat allergy. It will also increase instances of constipation, cost more than "regular" food, and be a regular source of frustration.

Don't cut the wheat unless you have a medical reason to do so (and if you're not sure about an allergy or Celiac disease see a doctor). Don't go g-free if a friend told you about this diet and it sounded like a great idea. If you don't have a medical reason to cut ANY food out of your diet then don't cut it - non-allergics get sick of the rigor, sick of the deprivation, allow themselves cheat-days and "just-this-once"s at birthday parties or when faced with a nice bottle of scotch. And then the food industry notices the lack of sales, scale back their production of "special interest" foods, and the foods we hoped we'd be able to have again are gone. And I'm left standing in the cereal aisle, crying over a box of Cocoa Pebbles and the realizing once again that I'm on my own.

              Eat what you can, and be merry.
                      - Alli

The Importance of Being (or having) an Advocate

When we were kids we played "the floor is lava." As a person with allergies I get to play "the food is lava."

Like most people with food allergies, I have a love/hate relationship with eating out. It's wonderful to have other people cook for you, to sit in a clean, well lighted place and have a friendly face bring you food and cater to your needs. It is also a tremendous, festering pain in the butt to always worry that your food has picked up some cross contamination, or that lovely lighting is creating unexpected glare that prevents you from carefully examining a potentially unsafe sauce, or that the friendly waiter didn't hear you right and wrote down "extra sesame seeds" instead of "no sesame seeds" on his sheet.

On top of the normal fears of a food-allergic person, I worked in food service for eight years. My time in the industry has left me with a deep and abiding desire to never, ever bother or in any way irritate any server, barista, bartender, cashier, baker, busser, or dishwasher ever again. I'm not worried about my food and the possibility of intentional tampering; I'm worried that I'm the one extra question, the one "Excuse me, Miss," that means another table in the section doesn't get their drink refill on time, doesn't tip the server, complains to the manager, gets the server written up, and eventually leads to cut hours and therefore a cut in pay (if this sounds paranoid to you then I'm a little jealous that you've never had to work a service job).

I don't want to be the straw that broke the camel's back, and after getting yelled at by customers (so many of them yell) for eight years I know that sometimes all it takes is one "Excuse me, Miss" to go from a great day at work to preparing to set the kitchen on fire so you'll have a valid reason to escape.

My husband, however, has never worked in food service and so he has no problem with stopping a server (it doesn't have to be our server - he doesn't discriminate) and politely interrogating them about what kind of oil the fries are cooked in, if the chickpea flour is really only chickpeas, if the ice cream has "natural flavors" in it, and whether butter or margarine is used on the grill. Sometimes I cringe a little bit as he holds these impromptu conferences with the waitstaff, but I know it's for my sake and I know how necessary it is.

A few months ago my husband and I went out for sushi. I got a tuna hand roll and was surprised to see it delivered to our table with a garnish of sesame seeds. I wanted to just pick them out. He insisted that we send it back. The next plate came with a garnish of tempura flakes. I didn't tell him about the flakes, tried to pick them off, ate the sushi and was sick for days.

Coping with food allergies in a public setting is a unique way to feel broken. If you don't tell people you've got allergies you run the risk of contamination. If you do tell people about your allergies you're admitting vulnerability. I know it's stupid, but that's how it feels.

There's a burger joint in the Southwestern United States called In-N-Out. If you've got food allergies you can tell them to do an "allergy grill" and they'll deliver a burger that is safe to eat. This is a great idea in practice, but when you're looking at a growing line behind your vehicle, watching frustrated patrons inside, and being repeatedly told by the cashier "it'll just take another minute, it always takes a little longer to do an allergy grill" you feel like a jerk. Everyone is waiting for you to be gone so that they can eat. The employees are working harder and the line is building up because your stupid gut can't handle it if there are some crumbs on the grill or some spread on the spatula.

So when I used to go to In-N-Out by myself, I didn't usually bother to ask for any special treatment. I just got a patty and some tomato slices and hoped for the best. Sometimes I was okay, sometimes I wasn't, but at least I wasn't in anybody's way.

I'm not around a lot of people with food allergies, for the most part, and the people I do know with food allergies generally deal with foods that are easier to avoid. Everyone knows that peanuts are dangerous to some people, so there are lots of peanut-free foods and ways to ask for peanut-free foods. But it's incredibly hard to ask for corn-free foods because almost everything processed has corn in it under 30 different names that only corn-allergic people bother to learn. And I don't know any other corn-allergic people (I've heard of them, and even chatted with one online, but trying to find one to meet up with is like deciding to have tea with a unicorn) so I have no support group for this.

I didn't expect my big, strong, non-allergic husband to fill the role of a disability support group, but he did.

The conversation we had was very simple. He said to me: "You are a person. You have a right to be around other people, and you have a right to be healthy and safe when you're out of your house." I hemmed and hawed a bit, saying I didn't want to be a bother and it wasn't a big deal, and he went a little further. "If you were in a wheelchair do you think people would be bothered by the fact that you need a ramp instead of stairs? If you were blind do you think a waiter would be angry about having to describe the dessert cart to you instead of showing it to you? When you were a server did it frustrate you if a deaf customer needed you to write notes instead of speaking? Did it bother you when someone asked you to check if the sorbet had eggs because her baby was allergic?"

I didn't even remember the incident with the eggs until he asked me that question. I was working at a coffee shop, we had about eight varieties of ice cream, a sherbert, and a sorbet. A lovely couple with an adorable baby daughter came in on a busy night, immediately disregarded the ice creams and asked me what I knew about the other options. I lifted the ice cream tubs out of the freezer and checked for ingredients lists, I went to our storage freezer in the back of the shop and tried to find the box the tubs came in, I checked online, and when none of those things helped I called the manufacturer to ask over the phone; it was too late in the day and I felt awful that I couldn't get these nice people and their little girl a solid answer. I wasn't angry at them, I didn't feel like they were taking up too much time, and though the line was getting long I didn't want to shrug them off with an "I don't know" and let it be their problem. But more than all I didn't want to be the one to say "it's alright" and serve a little girl ice cream that would make her sick, and if her parents hadn't asked about the eggs that's exactly what would have happened.

Most people are not awful. They don't want to hurt others, they don't want to steal, they don't want to break things. And if most people find out that their actions could harm someone else, they'll change their actions.

I'm getting better about being my own allergy advocate. There are several places local to me where I know what is safe and what is not, and if I'm not sure I can ask. I've even been forceful when I've discovered that my requests were ignored or forgotten (which is a huge step for me; I once traded entrees with a friend rather than letting her send food back to the kitchen because it was too spicy - it was too spicy for me too, but I didn't want her to bother the waiter). When I go to a new restaurant I always let the server know that I have food allergies and will probably have a lot of questions or I call ahead of time to ask about oils and fillers and flours. I'm still not perfect, and my husband picks up a lot of slack when I'm feeling anxious, but I'm getting better. I've become an assertion pro at grocery shopping, and will ignore anyone who tries to "ahem" me for reading a label too thoroughly (on that note, here's an open request to Trader Joe's: please make your aisles wider, as I have no place to read labels that is not in someone else's way).

This is something I need to get better at, something I need to be pro at, something that no one else can do for me all of the time and is the only barrier between me feeling great and me getting sick. If I don't ask about ingredients, if I don't make my allergies known, I am the only reason that I will get sick - no one else is to blame and no one else should be. I have to be my own advocate, to take charge of my well-being, because I am the only one who should be responsible for me, and to act otherwise is a much worse way of mistreating the people I was trying so hard not to bother.