Food Allergies and Famous Bedfellows

I haven’t written about celiac disease or related food allergy issues recently. (Remember that three week stint of chicken broth, pureed food, and sparking water with a straw? That made it pretty easy to avoid gluten or dairy.)

Liquid diet aside, I haven’t had too much to say about living with dietary restrictions. I’ve figured out ways to make home recipes tasty and safe, and I’ve learned what–and more importantly, how–to ask when I’m dining out. (Remember that whole selling one place and buying another? That transaction has certainly cut down on our dinners out, anyway).

But for everyone out there who is gluten-free, dairy-free, or suffers from any type of food allergy, I do have something to report. This week, Ming Tsai, nationally known chef and local celebrity and owner of Blue Ginger, was at the Massachusetts State House with his son, who has suffered from multiple food allergies, to urge legislators to pass a bill that would make dining out a lot easier for patrons and employees alike.

I’ve eaten at Blue Ginger, so I can vouch firsthand for its highly acclaimed food. It was one of the more memorable meals we’ve had. But I can also vouch for the fact that when I informed the waiter about my condition, he snapped into action, heading back to the kitchen and returning with a list of appetizers and entrees that were completely gluten-free. He also said that in the future, if I give the restaurant 24 hours notice they can usually prepare something special (and safe).

I was impressed with the service and the thoroughness, not realizing at the time that Ming Tsai is the national spokesperson for the Food Allergy and Anaphylaxis Network (FAAN). I found out later that he keeps a sort of “Bible” of recipes and ingredients in his kitchen, even including the ingredient lists for whatever prepared foods (think soy sauce) his dishes may require.

I think it’s great that such a well-known chef is putting himself out there and advocating for awareness of food allergies and dietary restrictions. The real story, though, the one that affects so many people who don’t live close enough to Blue Ginger to bask in its food-safe abundance, is the bill itself. It would require restaurants to:

–Prominently display a poster about food allergy awareness in a staff area
–Put a notice to customers on the menu that it is their obligation to inform their server of any food allergies
–If the restaurant serves 50 or more, obtain a master list of all ingredients used in each recipe that is available to the customer upon request

For more details, check out the language of the bill here.

As customers, it is our job to advocate for ourselves, ask questions, and disclose relevant information, just as it is the responsibility of servers and kitchen staff to try to answer our questions as thoroughly as possible and accommodate us as much as can be reasonably expected. This bill makes that process a lot easier.

I spent a lot of time in a hospital cafeteria over the past week, and each entrée and side dish had all the ingredients listed, including a bolded section that highlighted any of the major allergens, like dairy, nuts, soy, wheat, etc. It made such a difference, and the fact that I was able to zip through the line without pointing and asking about every item made it a lot more effective for all the non-restricted people in line, too. Win-win situation all around.

The key here is knowledge—people can do so much more when they have the right facts at their disposal. Not every restaurant can be a Blue Ginger, but with the right basic protocols in place, they can certainly be as prepared.

If You Offer It, They Will Come….

I’m no economist, but simple notions of supply and demand seem to dictate that if you offer a service to a captive market and meet with success, an inevitable increase in demand (and then more supply) will follow.

As logical as this sounds, I have to admit that for awhile I didn’t think the restaurant industry would take notice of what I already knew to be a clear demand for gluten-free dining—or at the very least, increased understanding of what gluten is and how it is incorporated in dishes.

Check out this interesting NYT article on GF dining in NYC. Turns out, savvy GF diners are proving that if restaurants cater to their needs, they will come. In droves, apparently. Long-standing mecca of gluten-free goodness Risotteria is mentioned (I am still dreaming of the breadsticks and chocolate frosting-stuffed cookies from last April), along with other restaurants that offer separate GF menus ripe with two things long absent from the GF dining experience: options and variety.

We’re a loyal lot, this band of celiacs who refuse to give up on eating out, and as the article illustrates, I’m not alone when I say that if I know of a restaurant that caters to my dietary needs, I will go out of my way to try it, and I’ll spread the word. Win-win situation, yes?

This has been a good week for me in terms of GF tolerance. I’m still adjusting to a dairy-free existence (I admit, I am a bit frightened to try the dairy-free, soy-free “cheddar flavored rice product” my well-meaning husband brought home from the grocery store today, but I’ll try it at least once), so knowing the GF horizon is a little less bumpy makes that easier. It can get somewhat daunting to plan a meal or peruse a menu when there are so many ingredients to avoid. I’m energized about the decision to go dairy-free—anything that even marginally reduces the mucus that chokes me is well worth it—but like going GF, it is still an adjustment.

The same day a friend forwarded me the NYT article, I had a more local encounter of the celiac-friendly kind. I think I’ve mentioned The Fireplace before for its gracious, accommodating nature and abundant native produce, but they’ve upped their GF game a bit since I was last there. They now offer a menu for celiacs that lists every item on the “regular” menu with a bold YES or NO next to each entry—yes meaning it is totally safe from cross-contamination and has no gluten, and no meaning it is not an acceptable offering.

The food and the menu were fabulous. And I think offering something like this is just as helpful for the servers, too—after all, if you don’t have celiac disease, it’s hard to keep track of all the things that contain gluten, especially if it’s a crowded night and there’s an extensive menu to check. It takes the pressure of both parties—I could make an informed order without needing to flag down our waiter with questions, and he could spend his time extolling the virtues of the great wine list with us instead.

Of course, at the end of the day it is my responsibility as the consumer to be educated and prepared, whether that means calling restaurants ahead of time, looking over the menu online, or being willing to be flexible when it comes to ordering off of smaller menus. Gluten and dairy will always have a large presence in most mainstream establishments, and it’s up to me to make sure I choose a restaurant where I can eat something.

But I’m not going to lie; when I walk into a restaurant and open up an entire menu where every single item is safe, it translates into one thing: a celiac foodie’s heaven.

What’s the Deal with Dairy?

I’m turning to you, thoughtful readers of the blogosphere, for some input on a decision that has been slowly building traction in the back of my mind for several days now.

Should I go dairy-free?

I saw my doctor this week, a follow-up appointment to see how I’ve responded to my antibiotics. My respiratory infection has definitely improved, but my bronchiectasis exacerbation from it is still pronounced, so I have a handful of new meds and inhalers to try and quell the chaos rumbling in my airways. I don’t even remember how it happened, but dairy came up in our conversation. Of course, I’ve long known that dairy is a mucus-producer, and if there’s anything I don’t need, it is more phlegm in my life.

“I really don’t consume much dairy,” I told him, sheepishly looking at my cup of coffee on his desk, which clearly contained milk. I don’t even like milk; even as a kid I never drank it on its own, it was merely a conduit to moist cereal, and as an adult, it’s merely a conduit to what I think is better-tasting coffee.

But when I thought about, I do have dairy often enough. I eat cottage cheese a couple of days a week because it’s a great protein source, and while I try to avoid cheese because of its fat content, I do have feta on my Greek salads regularly.

“Well, the less dairy you have, the better,” my doctor said. I nodded.

The seed was planted.

And then I stumbled across this site in the comments section on Kerrie’s blog (ironically, her original post included something I’d written about going gluten-free, so I’m now engaging in an amusing but totally productive game of blog-tag, I think 🙂 ) and I started to think about giving up dairy more seriously.

Enter the back and forth dialogue in my mind: It would certainly be a big sacrifice, lots of labels to read and accommodations to make. Yet so was going gluten-free, and you wouldn’t change that for anything, you know you feel so much better. Yes, but I have celiac disease, so clearly going GF would make me feel better–I am not lactose intolerant and don’t think I feel any worse when I eat dairy, so would I even see results? But don’t forget, you know you get more congested after frozen yogurt, so even if the only change was less phlegm and less exacerbation, wouldn’t that be worth it?

And, finally, the remaining question: But your diet is already so limited. Wouldn’t removing dairy make an already difficult dining situation (remember, one of your hobbies is trying new restaurants!) even harder?

Yes, but if it helped, wouldn’t it be worth it?

Leaving the dialogue in my mind alone for a second, what you do think? Is it worth a try? Is it something worth doing in degrees–eg, removing “big” thinks like milk, cheese, etc but not whey and all those little tiny ingredients that appear on labels? (This reminds me of people who go wheat-free but still eat many other forms of gluten). Would I still get any benefit, or, like going GF for a celiac, is it something that only works when you do it 100 percent?

Playing with Food

While it’s great to point out chains and restaurants that have gluten-free menus (oh the ecstasy of choice!), every now and again I like to pay some attention to those restaurants that are especially accommodating despite not being GF. This weekend, we went to a place that had the perfect balance of romance, “safe” food, and interactivity: The Wine Cellar in Boston.

The wine aficionado in me was overawed by the extensive wine list; even my husband couldn’t resist stating “A guy could get in some serious wine trouble here” several times as the night (and the drink tab) progressed.

But as seductive as the wine list was, it was the fondue that provided the real entertainment of the night. I’m the first to admit that when I think of fondue, images of my parents in their 1970s garb of polyester plaid and gargantuan shaded glasses huddled around a pot of bright yellow cheddar cheese come to mind. Okay, so maybe the only used their fondue set once or twice in their early years, but they are the point of reference I had for fondue at all.

Who knew food on sticks could serve as the perfect date night for a celiac girl and her foodie husband? The appetizer course was cheese (naturally), in our case a queso made of cheddar, cilantro, white wine, roasted red peppers, and onions. In addition to the bread, they served potatoes and, by request, steamed veggies. They made our queso with cornstarch, assuring us the only difference was that this GF version might break apart sooner. Our solution? We basically inhaled the entire pot before it even had time to separate.

“We just ate a bathtub of cheese,” I groaned, holding my stomach. “We’re disgusting.”

“Yeah we did,” countered my husband, clearly proud of our prowess, who lives by the motto that there is no such thing as enough cheese.

To our pleasant surprise, the entrees and their assorted dipping sauces were naturally gluten-free. Well technically, my first surprise was that fondue entrees involved anything other than cheese, but once I figured out that we got to select four meats and that everything they came with I could actually eat, our date night got even sweeter.

I’ve talked recently about how much my attitude towards preparing and consuming food has changed—I like everything fresh and healthy, I don’t take shortcuts or eat anything processed or artificial, I am deliberate about what I eat, when I eat it, and how it will make me feel. Part of this is a direct result of getting diagnosed with celiac disease, but part of it is because I married a man who taught me to savor taking things slow, to enjoy cooking as an activity and not merely as the means to supply and end to hunger.

For people who have been working seven days a week for a few months now and needed night to decompress, fondue was the perfect choice. There is nothing more deliberate or conscious than selecting which piece of meat to skewer and place in the steaming pot or broth and deciding how long to let it simmer. Eating a meal piece by slowly-cooked piece like that is an experience that magnifies this approach towards food, and it was fun. Yes, fun. We experimented with all different meat/sauce combinations, we realized that chocolate covered grapes were as delicious as chocolate covered strawberries, and we also realized that when you’re really paying attention to what you eat and who you’re eating with, three hours can elapse and you’d never know it.

The wine didn’t hurt, either.

The Gluten Wars—To Ingest or Ignore?

A good friend of mine sent me this NYT article entitled “Jury Is Still Out on Gluten, the Latest Dietary Villain” early this week, and ever since then, I’ve read or listened to similar threads on this debate.

(Can I just take one second to acknowledge the overall awesomeness of my friends, who always have rice crackers on hand for me, consider my dietary restrictions when thinking about restaurants, and have been known to show up with GF desserts? You’re celiac experts now, and I really appreciate it!!)

Obviously, there is little debate here for people who have confirmed celiac disease—if we want to reduce symptoms and stop damaging our bodies, we can’t eat any foods that contain gluten. It’s pretty much a non-negotiable.

Luckily, as I’ve mentioned before on this site, finding gluten-free foods and businesses and restaurants that understand celiac disease, is easier than ever before. When I go to PF Chang’s, it’s specifically because there is an entire menu for me to choose from and I don’t need to worry about cross-contamination. When I do my weekly shop at Whole Foods, it’s because I know that whatever my mood or craving, I can find something that is both gluten-free and healthy.

Of course, this increased awareness of celiac disease is also tied to the fact that mainstream society has latched onto the idea that gluten-free living is the way to go. It’s the latest trend, with people ditching office pizza and processed food for GF fare. People with symptoms that resemble those reported by celiac patients who test negative for the disease—they consider themselves as having a “subclinical gluten sensitivity,” according to the NYT article—say they feel better when they go GF anyway. Others report that symptoms of other autoimmune diseases like arthritis decrease once they go gluten-free.

The experts are still teasing out the connection between gluten and the types of success stories non-celiacs trumpet. I’m happy to leave that quagmire to them, but I do think it’s important to consider a very basic fact alluded to in this most recent article, one I’ve been championing for a couple of years now. What if part of the reason people who do not have celiac disease but feel better when they go GF has less to do with their physiological sensitivity to gluten and more to do with the fact that the GF diet is, on the whole, a lot healthier?

Think about all the “staple” foods that contain gluten—breads, pizza, pasta, etc. A huge amount of junk food, from fast food hamburgers or “chicken” nuggets to cookies and doughnuts and fried food, contain wheat or other grains with gluten. Is it all that surprising that if you swap out breads and fast food for salads, vegetables, and un-friend, un-sauced, unadulterated proteins you just might feel better?

Here’s the anecdotal evidence I can offer: two years ago, I convinced my diabetic and otherwise medically-challenged father to go GF for six weeks. I went over the list of “safe” foods, I taught him what to look for when reading labels, and I went grocery shopping with him to help him begin his new lifestyle. I should add here that his diet was fairly healthy to begin with since he’s a diabetic heart patient—lots of fish, veggies, etc, and when he ate starch like wheat bread, pita bread, or pasta, it was usually in moderation.

Within two days of going gluten-free, his body’s demand for daytime insulin dropped by 50 percent. Yes, you read that right, 50 percent. And what’s more, he sustained that decrease over the six weeks. It was a struggle to adjust and he did need a few days to get a handle on middle of the night blood sugar drops, but he lost some extra pounds, had more energy, and needed less insulin.

Does he have celiac disease? No. But did eliminating excess starch and processed food impact his health in a positive way? Absolutely.

Getting diagnosed with celiac disease has totally changed my approach towards selecting, preparing, and consuming food. Everything is fresh and, well, whole now. I make my own chicken stock, eschewing the salty, processed kinds. I make my soups and chilis from scratch, avoiding the gluten-y store-bought kinds that I can’t imagine eating ever again. I have fresh vegetables with every lunch and dinner, and I take it as a matter of pride that nothing in my kitchen has an ingredient list of more than, say, four or five items.

The jury may still be out on gluten and the masses, and maintaining a GF diet can certainly be challenging and frustrating, but when I wouldn’t trade my GF attitude towards healthy eating for anything.

Cravings…and They’re Only Three Years Too Late!

It all started two weeks ago at my niece’s fourth birthday party.

It wasn’t so much the sight of the pony-shaped cake (I kid you not on that one, but it was certainly cheaper than purchasing an actual pony) with the creamy frosting as it was the smell of it—thickly sweet. After watching her blow out her candles, I returned to the other side of the room and tried to ignore all the pieces of cake being passed around the room.

The following weekend, I was buying coffee in an attempt to be alert for my Saturday morning fellowship meeting when the sugary aroma of the donuts on display in front of me stopped me in my tracks. That same night, I had salad with grilled mushrooms and chicken sausage for dinner—something that usually satiates me just fine—and I could barely eat it when I saw my husband spooning up the very same chicken sausage, except his was nestled in a deep bowl of macaroni and cheese.

Even when we met friends for sushi, a standby favorite when I remember to bring my gluten-free soy sauce, my maki paled in comparison to the pan-fried dumplings that accompanied our order. What was flying fish roe next to piping hot, garlicky dumplings?

The last straw came when we were watching a Food Network Challenge that involved baking cakes of celebration.

“Do you realize that as long as I live, I will never have a bite of real cake again?” I asked my husband.

He looked at me nonplussed; he’d gummed down the gluten-free layer of our otherwise normal (and, apparently decadent) wedding cake with me, so this definitely wasn’t news to him. The catering staff assumed we’d both want to eat from the same top tier we’d cut, so he got the gluten-free version of raspberries and cream. That’s love. (He also accidentally dropped some of said GF cake down into my strapless dress when we were cutting it, so I’d say we were even!)

“And I will never take a bite of a glazed donut or eat pan-fried dumplings or….” I continued to rattle off a list of sweet and salty carb-loaded goodness. (Let me interject with yes, I know there are plenty of GF options out there and I know they are quite declicous and worth the effort, but that’s the rational response, and I’m not talking reason here.)

The humorous aspect to this conversation is not simply that I had this epiphany a full three years after I was diagnosed with celiac disease. Seriously, isn’t it a bit late in the game for this?

No, what’s really kind of ridiculous is that these were not even things I ate “before.” I always turned down the box of Munchkins that went around the classroom, I was militant about my no-cake policy on my birthday since I was in middle school, and I always picked “steamed” over anything “pan-fried.” I ordered salad when friends got pizza, and the only other time I’ve had fast food since the late 1980s was when I was on a spelunking trip in Western Ireland and there were literally no other options.

I’m not exaggerating any of that. A lifetime on steroids and an ever-present diet will do that to you.

So yes, for two weeks now I have had intense, distracting cravings for things I didn’t even like all that much. It’s not that I miss them—I miss the idea of being able to choose them.

Does that sound incredibly silly?

Two nights ago, my husband almost gave in to lesser instincts and came close to ordering delivery pizza at 11pm. He went back and forth, ultimately deciding it would really be too gluttonous.

“Well, if it makes you feel any better, I will never have a piece of pizza from Domino’s as long as I live,” I said, half-joking, half being a jerk.

“Um, not really.”

It didn’t make me feel any better, either. It just made me sound bratty. That was the moment I snapped out of it a bit. I’ve since reconciled with my salad greens, my apples and red grapes, my grilled chicken and my brown rice, my rice crackers and gluteen-free tamari.

Mostly.

Food is Love

I met John exactly two weeks after I was diagnosed with celiac disease. At the time, I was just as apprehensive about the whole situation as he was, though we manifested it in different ways. Our first date—while wonderful—included several renditions of the following:

“Are you sure you don’t mind if I have some bread? I don’t have to…I can even ask the waitress to take it away if it’s bothering you.”

“No, it’s fine. I don’t mind. Just because I can’t eat it doesn’t mean you shouldn’t.”

And back and forth we went, both trying to make the other one comfortable and not exactly sure how to do that.

He told me later that of all my health problems, celiac disease was the only one that scared him initially—he loved eating out so much and wondered if we’d have enough in common. Naturally, the irony of that statement is that it turned out to be food that brought us together, and food that helped him bring me back to myself.

That night I ordered a salad. I didn’t want to be the “that girl,” the one who only eats salad, especially on a first date, but I was too nervous to try anything else on the menu. Grilled chicken over greens? Now that was a dish I knew was gluten-free.

We both have a lot more confidence now.

Going gluten-free was certainly life-altering, but I had so much other stuff on at that point in my life—I was in and out of the hospital several weeks a month with respiratory infections, and had also just gotten officially diagnosed with PCD and bronchiectasis, which were pretty serious and life-changing events on their own. I was adjusting to new medications, dealing with a lot of lung-related complications, and had only recently started having chest PT twice a day, a huge transition all on its own.

With so many substantial changes and serious illness all at once, eating salad for lunch and dinner and yogurt for breakfast was an easy way to stick to the GF diet without investing too much time and energy that I didn’t have. Plus, as a single girl living in an apartment the size of a large suitcase, less groceries and cookery meant more space to live.

And then we had our second date, and our third, and suddenly I was going to Italian and Malaysian and Mediterranean restaurants, and ordering a garden salad wasn’t cutting it anymore. John loves trying new things, and I wanted to enjoy dining as much as he did—and, obviously, I wanted him to enjoy dining with me. I started asking questions about meals and learning the best way to approach servers with my allergy concerns.

And something else happened—we began cooking meals together. John would print out GF recipes he’d found online and we’d go to the huge grocery store near his apartment. Left to my own devices, my shopping cart still consisted of lots of lettuce and some organic soup, but we branched out together: gluten-free flours for apple pies, cornmeal for polenta pizza, spices for homemade Indian food and fresh vegetables for stir-fry. I began to look forward to cooking the way I had when I was younger; John’s creativity was contagious.

Before I knew it, I was eating hot food again on a regular basis. I was also finally starting to feel better—my energy was improved from the GF diet, and my lung infections were less severe and my time in the hospital decreased as a result of my new treatments. Soon, I noticed another change, something I hadn’t seen during all those long months of being in the hospital and being preoccupied with all the adjustments I had to make: I was happy.

We’ve been married a year and a half now, and we’ve done even more adjusting. John no longer eats exclusively gluten-free meals in our home—he no longer worries he should, and I no longer worry that he’s worrying. Some nights, he has ravioli and I make brown rice pasta; other nights we have naturally gluten-free risotto or roasted chicken or tuna steaks.

For this Valentine’s Day, John made our plans a few weeks ago. He selected a restaurant we’d always wanted to try that had a special pre-set menu for the occasion. He shot me an e-mail:

“There are a bunch of options for you that are safe, I checked. The menu is attached. What do you think, do you want to go out to dinner?”

This Valentine’s Day I think just might try the grilled ostrich skewers…you’ve got to live a little, right?

Gluten-free Beer? Guzzle Away!

It’s been awhile since I’ve devoted space to the celiac dining experience (though I have been busy compiling new favorites for my gluten-friendly restaurant list!) Luckily, though, it seems others are taking care of that for me–today’s Sunday Globe ran a great article on gluten-free beer.

Now, I know GF beer has been around for awhile–I’ve even tried a few brands, despite being more of a cider girl myself–but what is important about this is that the beer, Redbridge, is prodcued by Anheuser-Busch. In other words, we’re mainstream! Gluten-free options for the millions of Americans living with celiac disease have come a long way since the dark days of even a decade ago, when no one had heard of the disease and grocery store shelves were lined only with forbidden foods. We’ve seen gluten-free pretzels and breads, gluten-free baking mixes and soy sauces, etc–it makes sense that to open up the gluten-free market to include alcohol. Cheers!

Garlic and Gluten-Free Guts

I just finished reading Ruth Reichl’s memoir, Garlic and Sapphires. The former New York Times restaurant critic’s sumptuous details and rich descriptions lured me in from the start, and I couldn’t help but think she had the best job around—and that no one in her position could ever be celiac.

I immediately decided I would one day add “four-star celiac food critic” to my list of professions. After all, I’d already become a natural at the art of mainstream fine dining, celiac style. I wasn’t about to let my condition scare me away from the champagne taste I somehow managed to keep up on my decidedly less sparkling budget.

When I first got diagnosed, I worried my dining out options would be permanently limited to plain grilled chicken and brown rice. I’d always been a healthy eater in that I avoided fried food, full-fat dairy, and starchy, processed carbs like white bread and sub rolls, but I was still an adventurous eater. The spicier the sauce or more exotic the marinade, the better.

Did this mean saying goodbye to piping hot Indian food, delicate Vietnamese soups, rich French sauces, authentic Italian entrees, and hearty Irish pub food forever?

So I did what any newly-diagnosed, slightly obsessive/compulsive celiac with a photographic memory would do—I immediately memorized the extensive list of “forbidden” foods I found online, learned how to scan ingredient lists in under 30 seconds, and road-tested the quickest route to Trader Joe’s I could find. I experimented with new recipes, and, most importantly, I learned from my mistakes.

Some people around me are still terrified to serve me food—eschewing a lifetime of tradition, my Italian grandmother won’t even cook for me, and my brothers still precede a visit of mine with several phone calls of the “what can you eat? Can you have X?” variety, but I am over it.

I’d always been the type of customer who hated to make a fuss—if my chicken was pink, I’d gingerly eat around the undercooked parts rather than send it back. If I got the wrong side, I’d pretend I genuinely liked brussell sprouts. But now that I knew I was celiac, I couldn’t be meek.

Preparation was the key to successfully dining out. When possible, I checked out menus online beforehand, making a shortlist of items I thought were “safe” so I could inquire about them. Sometimes I even called ahead to make sure accommodations could be made for me. I learned to be upfront from the beginning of the meal and wasn’t afraid to ask a lot of questions. When a waiter replied “I’m pretty sure it doesn’t have any flour,” I wouldn’t order until he’d physically gone to check into it.

I am pleasantly surprised by how many kitchens and servers are familiar with celiac disease. It’s music to my ears when a waitress says, “Oh, you’re celiac? No problem. I’ll show you the four entrees I know are safe, and can talk to the chef if you’re interested in something else.” A few times, a chef has gone as far as personally marking the menu so I’d know all my options. I remember the places like that and talk them up to everyone I know, and like Ruth Reichl’s focus on good service for every customer, famous or not, I also remember the places that couldn’t be bothered to answer my questions.