May is National Celiac Awareness Month. This morning, I posted a “Happy Celiac Awareness” message on GlutenFreeBaking.com's Facebook page.
The first response surprised me:
“Am I supposed to cheer here? Because all I want is a magic pill like lactose intolerant folks have... I really miss eating real glutenful bread! and being able to make one meal for my family.“ ---S.
At first I winced. Then my brain went into, “I can help!” mode. Separate dinners? Missing bread? These are my strengths! I have recipes! Tips! Tricks! Maybe I could write a piece on five ways to make dinner easier.
And then...I thought about it.
It's hard to witness struggle and vulnerability, isn't it? Brené Brown, who you probably know from her popular Ted talks, discusses problematic responses to vulnerability. One of them is problem solving. Instead of empathizing, we so badly want to get the person out of the pain that they are feeling that we throw tips, tricks, and suggestions at them. I call it the, “You know what you gotta do” syndrome. And here I was, about to do the same thing.
Instead of throwing lots of tips and recipes at S, I thought about the parts of living gluten-free and food allergic that are tough. The more I thought about it, the more I realized how much we don't talk about it.
Most of the time, as a community, we are so grateful for diagnosis that we overlook the real struggles of living gluten-free. We point out-- ad nauseum-- all the naturally gluten-free foods, the new products, the restaurants with gluten-free menus but we don't say, “Hey, you know what sucks?”
S's bravery in talking about what was hard for her, inspired me to come up with a list of my own.
Here it is:
Doubters are a Pain in the A__
Somehow the gluten-free diet--a medically required for folks with celiac disease and other health concerns-- turned into a fad diet, at least in much of the public's consciousness. The term “gluten-free” pops up on more mainstream products each day. (Sadly those labels are meaningless. The FDA still hasn't set standards for what it means to label a product “gluten-free.”)
Along with this fad status, some folks are trying the gluten-free diet for non-medical reasons. Fine with me. Really. I don't care what folks want to eat. However, you'll often encounter people (co-workers, relatives, that annoying guy at the gym) who, when they hear you are gluten-free say:
“Oh. I tried that diet for a few days. Didn't work for me. Why are you doing it? Trying to lose weight?”
You will then explain that you have celiac disease or a wheat allergy or whatever reason you are on the diet and they don't hear you. At all. You might as well have chirped a Broadway song at them. They will continue to repeat that they tried the diet, it didn't work, and therefore you should just give up or eat “a little gluten.” You try to counter this with medical facts or solid reasons why the gluten-free diet does, in fact, work for you and their eyes begin to glaze over. Or they'll begin to squabble with you.
As attractive as it might seem, smashing your head into a brick wall in this situation is not advised.
Restaurants are Risky
If you're a member of the Delphi on-line celiac support group, you know the phrase they require on all restaurant review posts: “eating out is risky.” It's so true.
Today more and more restaurants offer gluten-free menus. Great! Fabulous! Wonderful! Until you start talking to them.
For each restaurant that really understands what it means to serve a safe gluten-free meal, you find at least two that don't know anything about cross-contact and believe “gluten-free” simply means no bread.
Food-centric Social Gathering are Tough
Weddings. Birthday parties. Church potluck suppers. Your extended family's Sunday brunch.
What do these things have in common? Food. Some families go out of their way to ensure these gatherings are gluten-free. Most don't. If you're like me, you find yourself either toting food with you or sipping on a drink while everyone else munches.
This isn't the end of the world. But it can be a pain. And I don't mean a hunger pain. Often when you're not eating, folks want to know why you're not eating. And that? Well, see #1.
Our Food Costs More
Right now a pre-made loaf of bread costs way more than a comparable gluten-filled loaf of bread. Same goes for cookies, crackers, and pasta.
With the additional expensive, you also get limited selection. Even with growing popularity, gluten-free remains a niche market. Right now we're an expanding niche but still a niche. Gluten-eaters can buy seasonal or Rainbow Shure, Bert- flavored Oreo cookies, but we will face the same seven or eight cookie choices in the aisle month after month after month.
Spontaneous Travel Requires Planning
One the glorious benefits of living in upstate New York is that in just a few hours I can be in NYC, Boston, or the mountains of Lake Placid. And in (much) less than an hour, I can drive to Vermont, Massachusetts, or New Hampshire.
Great, right? Sure is! But even those local day-trips require a bit of pre-planning. If we leave early in the morning, I wonder if I can find anything to eat for lunch or dinner. If the answer is no, I pack food. (No big deal but I can't just hop in the car and go.) And if the answer is yes, I cross my finger that, indeed, the restaurant I ate at last time, still offers gluten-free/nut-free/sesame meals. (Also, see #2)
How about you? What's on your list? What do you dislike about living the gluten-free life?