An Exciting New Venture (Or, A Better Life…)

In five years of marriage, we’ve acquired two rescue dogs, two different homes, two graduate degrees, four new jobs, two book deals, and after a long (long) journey filled with more challenges and compromises than we ever imagined, we are parents to a fiercely loved little girl.

And now it’s time to announce the next big venture. I am incredibly proud and excited to tell you that as of today, my husband’s new company, The Well Fed Dog, is up and running. If you’ve read the posts about gluten-free cooking on this blog, you know we are both passionate about eating whole, healthy, fresh foods. With experience as a line cook and restaurant manager before he went into banking, John is the one who executes our culinary adventures, and he is happiest when in the kitchen.

If you know us in real life, you know we’re both insanely passionate about our two rescue dogs, and dogs in general, and making sure they are as healthy and happy as possible. (And yes, one of our dogs has a major food allergy, so we know how important knowing what’s in your dog’s food and knowing where those ingredients came from really is.)

Now, John has combined these two passions into The Well Fed Dog, which delivers fresh, all natural, grain-free dog food. All ingredients are human-grade and hand-selected, and all recipes are carefully formulated to meet dogs’ special nutritional needs. The Well Fed Dog also offers locally made treats and eco-friendly chew toys, as well as a totally customizable membership plan and benefits. You can find out so much more about the mission, philosophy, and product offerings by checking out The Well Fed Dog’s brand-new Web site.

This has been a long time in the making, and comes from the heart. It is a big change for him and for our family, and having him doing something we both believe in so much is an amazing opportunity.

So many of you have watched big events unfold in our lives through this blog, and have been such a source of support and encouragement, and I am happy to be able to share this news with you. Whether you’re a dog lover or someone who knows dog lovers, there are lots of way we’d love for you to be involved and spread the word:


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Food Allergy Love Stories...and a Giveaway!

So, remember when I talked about striving for balance just a few short weeks ago?

Ha!

Turns out I was onto something with my apprehension, as having a baby, a full-time job, a book to write, and many other appointments, side projects, and health stuff has my head spinning and my alarm clock going off way, way too early.

While I figure out how to make this all work, allow me to resurface just in time to talk about fellow blogger and writer Sloane Miller’s forthcoming book, Allergic Girl. (You can check out her book trailer here, too.) In it, she shares practical, hands-on strategies for living a full life and managing food allergies and symptoms—from dating and dining out to work functions and travel.

In anticipation of the book’s upcoming release, and in honor of Valentine’s Day, Sloane asked some of us food allergy bloggers to think about and share positive food allergic/celiac disease love stories. What’s more, if you share your stories and experiences here, and leave your e-mail in the comments section, you will be eligible for a free copy of Allergic Girl.

Appropriately enough, one of my favorite gluten-free/celiac disease posts from a few years ago is called “Food is Love.” It tells the story of how my husband and I became a couple right after I was diagnosed with celiac disease, and how food played a role in bringing me closer to him and in bringing me back to myself. If you have a second, please click back and re-read it, and then share your positive food stories in the comments section here.

Not only will you have a shot at a free copy of a great book, but you’ll make Valentine’s Day a little more festive ‘round these parts.

This year, I’m navigating a gluten-free, dairy-free, and soy-free Valentine’s, so I am back to making adjustments and accommodations. But, if it means my little girl can continue to breastfeed without getting sick due to her allergies, then it’s totally worth it to me. I suppose that’s a positive food/love story of a different kind, isn’t it?

I’ll be back later this week, and the giveaway goes through February 18, so you have a few days.

Giving Thanks

This is the time of year when gratitude posts are appropriate. From the evolution of gluten-free Thanksgivings to recognizing the support systems in my life, I have never lacked things to be grateful about.

My relationship with gratitude has never been as simultaneously effortless and complex as it is this year.

Without hesitation, I am utterly, unequivocally grateful for my daughter. She is the greatest joy of my life, and every single day we both acknowledge how fortunate we are that she is in our lives. That she is happy, healthy, and thriving, that we made it through the pregnancy to enjoy the other side? Grateful does not begin to describe what we feel for that.

For the team of doctors, nurses, and nurse practitioners who managed an extremely challenging pregnancy ; the lung doctor who championed our hopes and dreams at every turn and fought for us and our baby; and access to a world-class hospital and top-notch technology literally minutes away—we literally would not have our daughter without those people and that place, and we are so appreciative.

For the relatives and friends who checked in on me diligently and visited during bed rest; made months of tests and hospital visits and relative isolation so much easier with phone calls, texts, and humor; and celebrated in our baby’s arrival and continue to support us in so many ways and share our happiness with her now—we realize how lucky we are to have each of you.

The examples above were so easy to write because so many wonderful things have transpired this year they spill onto the proverbial page.

But as is the way, tough things always seem to happen right at the cusp of great happiness and joy, and this year has been incredibly painful and challenging for loved ones in terms of health crises. For the many tears of joy I’ve shed recently, there have been many, many moments of the opposite.

Gratitude is relative. During any kind of medical emergency or acute trauma, it is basic: Please just let this person survive. That’s the only thing that matters. And when morning breaks and you realize your first wish has been met, you exhale a little bit and start to focus on units of time, small changes in status: the next hour, the first words spoken, how many days until heavy equipment is removed. Each little victory is momentous, and each blip or setback is not too crushing because it is better than the alternative you just came far too close to witnessing.

But some days I have trouble with how muddied gratitude and grief become. Of course, the relief and gratitude that the patient is alive and doing pretty well is always there. But there are many losses to process, too; many changes in how we thought life would be, in the dreams we had for the future.

Sometimes I feel like I am cheating on gratitude by indulging in grief or sadness, and the back and forth between happiness/optimism and frustration/anger is tiring.

We are so lucky because it could have been much worse, but that doesn’t mean that where we are is entirely enviable, either. It still happened. I know it doesn’t mean I am not grateful when I think that, but I still feel guilty.

But like we did in survival mode, all we can do is take it day by day. So this year on Thanksgiving I will hold my daughter close and focus on the amazing blessing that she is, and focus on the fact that so many people who love her will be with her that day. We all made it through a lot this year, and for that, I am grateful.

Seeking Simplicity

I’ve been quiet lately, but I want to thank everyone who has continued to check in on me, leave comments, and send e-mails. Your ongoing support and encouragement means a lot!

So, I’ve been working on this post on dealing with the medical establishment and being an active participant for a couple of weeks now. It has languished three-quarters of the way complete for several days, yet I just can’t pull it together.

For one, I’ve never found it useful or interesting to write about not feeling well or detail a list of what’s wrong. If I can take those illness experiences and draw something larger from them, great, but short of that, those kinds of posts don’t do much.

But there’s something else going on. I’m at the hospital several times a week for tests and appointments. I’ve spent too much time on the inpatient labor and delivery floor for someone who has not yet delivered.

I have participant fatigue, people.

And if I’m this sick of the medical establishment, that definitely won’t make for worthwhile reading.

So, I’m writing about blueberries.

Yes, blueberries. Aside from a brief flirtation with clementines in the first trimester, blueberries are my biggest (and really one of my only) cravings this entire pregnancy. It’s like Christmas morning to me when my husband comes home from the grocery store and tells me it was “buy 2, get 1 free” day for blueberries. I eat them by the handful when I need a snack. I eat them on cottage cheese for breakfast or lunch. I never tire of their crisp, sweet, yet pleasantly tart taste.

They are so simple and refreshing, a one-ingredient snack I just need to rinse and eat.

And simplicity is more important than ever when you’re gluten-free and pregnant. After all, being celiac has a lot rules and restrictions, and the dietary guidelines for pregnant woman are not insignificant.

The way I look at food has changed over the past 33 weeks. There is a lot more compromise and negotiation. I started eating (some) dairy again, trading off the phlegm-producing effects for the calcium-rich benefits for the baby. I never drank juice because I don’t like consuming a lot of sugar, but now I mix cranberry or orange juice with sparkling water and know that the baby loves it because she kicks vigorously.

There is also a much bigger desire to follow the “less is more” mindset when it comes to ingredients, and the negotiations continue. For example, I was thrilled to find a popular brand of yogurt that labeled several flavors “gluten-free.” I didn’t have to scour over ingredients, check corporate statements, etc to get some calcium (and coat my stomach for the many pills). Yet these flavors also included a lot of additives and two types of artificial sweeteners, which while cleared by the American Pregnancy Association, are still things to watch.

So what’s the lesser evil?

Spend some time clicking through the Center for Science in the Public Interest’s guide to food additives, and you’ll start reading those labels more carefully.

It’s a tough balance, because I am loath to obsess over every single recommendation and guideline, and I want to enjoy healthy food, not be scared or overly limited by it.

And that’s how we get back to the blueberries. We’ve always had a household low in processed foods but that’s more important to me now than ever. It is easier to eat fresh fruits and vegetables, all-natural peanut butter (nothing but peanuts on the ingredient list), freshly popped corn on the stovetop, and lean meats, chickpeas, and other legumes than it is to navigate multi-syllabic preservatives.

Plus, if you’re watching sodium intake like I am, the sky-high sodium levels in processed foods are another turn-off.

My life is completely overrun with complications and competing health priorities right now. I don’t need to deal with them when it’s time to eat a meal.

Simplicity wherever and however I can find it is so important right now. Luckily for me, my cravings seem to get me just what I need.

Gluten-Free and Pregnant

I’m being totally honest when I say that I am glad I was diagnosed with celiac disease. When you live with a lot of conditions that are hard to treat and manage even with lots of medications, knowing there is something wrong you can manage through what you eat alone is a liberating, empowering thing.

Most days, I barely even think about being celiac. The way we prepare food is now more of a lifestyle than a dietary chore. I know what questions I need to ask, I know the ingredients to look out for, and I know the best places for me to eat. I am always vigilant, of course, but it’s not like I wake up and think about eating gluten-free as a challenge or as deprivation.

I realize not everyone feels the same way, and I totally get why people take awhile to adjust and grieve over many things they can no longer enjoy. But for me, the diagnosis was a turning point, and brought about many positive changes in my attitude towards food.

I’ve always been ridiculously conscious of what I eat. Spend a lifetime (literally) on steroids, and you spend a lot of time passing on birthday cake (at your own birthday), sticking to the salad bar, and wondering at what point a diet consisting of 95% vegetables and chicken/fish will work for you. (You also break tons of bones, destroy your adrenal system, and have lots of other fun side effects but I digress.) In those days, though, I was focusing on calorie content, not necessarily quality.

All that changed when I began eating gluten-free, and I now find satisfaction in knowing how few ingredients are in each of the meals I eat, not how many calories are there.

I’ve noticed a further evolution in my attitude towards food since I became pregnant. On the one hand, I am more vigilant than ever about cross-contamination and accidental “glutening.” Coupled with the dietary restrictions all pregnant women are encouraged to follow regarding caffeine, certain fish, shellfish, lunch meat, soft/unpastuerized cheeses, alcohol, etc, there are certainly many things to keep in mind and avoid.

And I’m not going lie—with weeks and weeks of violent and long-last morning sickness (at one point I was conducting virtual office hours with a bucket in one hand and typing with the other), the idea of a simple saltine was (is) appealing.

But I don’t find the dietary limitations, well, limiting. I feel really good about what I put into my mouth. You see on message boards sentiments like “whatever you eat the baby gets first” and my doctors tell me the baby takes what he/she needs from whatever I eat. I’ve gone back to (limited) dairy consumption for more calcium, and started eating breakfast every day. Knowing the bulk of what my baby gets comes from cottage cheese, vegetables, nuts, yogurt, and lean proteins makes me feel like no matter how wacky my body is and how medically intensive this pregnancy is, I am doing something right for this kid. No processed food. No junk food. Nothing overly salty or fried.

Sometimes it is challenging to balance my (many) medications with prenatal supplements and vitamins since some need to be taken on an empty stomach and others on a full stomach, but I’ve incorporated smaller snacks throughout the day and have found somewhat of a groove.

Because I had to go back on steroids at one point in this pregnancy, and because of my history of steroid use and related problems, I am at an increased risk of gestational diabetes. We’ll see what the test reveals, but in terms of what I eat, I know I am doing what I can to set us both up for a healthier outcome.

Gluten-Free Dining, With a Side of Controversy

A couple of years ago, I wrote about proposed legislation that aimed to increase food allergy awareness and ingredient familiarity in restaurant kitchens. Championed by superstar chef and food allergy advocate Ming Tsai, the proposed bill would also ask restaurants to put a notice to customers on the menu that it is their obligation to inform their server of any food allergies.

At the time, I wrote “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.”

And I still strongly believe that. Between understanding and preventing cross-contamination to keeping a master list of all ingredients, such moves make the dining experience easier for both the customer and the wait staff, who would have access to a lot more information when customers inquire about the menu. It’s about shared responsibility.

Imagine, then, how pleased I was last week when I saw this update in the Boston Globe about how the Mass Department of Public Health plans to implement these changes this summer.

(And, coincidentally, having just dined at Ming Tsai’s Blue Ginger again recently, I can vouch for how stress-free and relaxing the experience it is when you know your meal is safe.)

Perhaps I am just naïve, but what I was not prepared for were the angry, ignorant, and vitriolic comments readers left at the end of the article. Sure, there were comments that applauded the measures and saw the potential, but I was shocked at how many were so passionately awful about it. For some, it seems that any legislation, whether it directly affects them or not, is anathema and is yet another example of the “nanny state” liberal politics in Massachusetts.

Whatever.

Here’s the rub: if you don’t have food allergies, you don’t have to ask any questions, and nothing about the food you would have ordered anyway will change. This bill isn’t an iteration of Big Brother and won’t dictate what you eat, it will simply make it safer for others with food allergies to order food, and will make it easier for kitchens to share information about their ingredients.

Others complained that waiters will have to now explain the entire menu to everyone, or that the private sector should not have to cater to people with food allergies with the government looking over their shoulder.

Huh?

Only people with food allergies and specific questions about dishes will need explanations, and if that’s not you, why do you care? And if someone in your dining party has allergies, why would you begrudge that person his or her questions?

I just don’t see how training kitchen staff on clean cross-contamination measures or having a comprehensive list of ingredients on hand is forcing the private sector to cater to us.

I’ve lived with a diagnosis of celiac disease for six years and I’ve learned a lot about how to eat gluten-free. Through trial and error, I’ve also learned how to eat out safely and with confidence. I love it when places have GF menus, but I don’t expect them. I go out knowing the risks and am fully responsible for them. I alert my server of my issue and ask questions politely. I’m not demanding, and if all I can eat is a salad (and that rarely happens these days), I am fine with that.

I don’t expect staff to cater to me, and I don’t get bent out of shape when it turns out there isn’t much to eat. That’s the risk I take when I go to restaurants without GF menus.

But what I do expect? I expect that when I ask a few simple questions, the staff will be able to answer them. I expect that when I am expressly told something is GF that it truly is safe, and hasn’t been cross-contaminated. Implicitly, that means the kitchen understands that telling me something is GF means they’re telling me I won’t get sick. If this bill streamlines this process for all parties involved, that’s great.

Fortunately, my risks are not potentially life-threatening the way they are for others with severe food allergies. I take them extremely seriously, but if some uninformed waiter serves me food that contains gluten, I will be sick for a few days. It’s unpleasant and unnecessary but in the immediate moment, it won’t kill me.

Others aren’t so lucky. Is it really that inconvenient to make sure the people preparing the food know what’s in it?

My personal favorite of the comments went something like this: Shouldn’t people with allergies know that?

We’re not under any illusions our dining staff should be responsible for diagnosing us. We’re well aware of our situation and that’s why we disclose any allergies and ask questions.

I was once on a plane with a man who was outraged he couldn’t eat peanuts on the flight because someone on board had such a severe allergy he/she could experience anaphylaxis from being near them. He didn’t even have peanuts; he was incensed that someone’s life precluded his right to eat hypothetical peanuts.

Yikes.

To all the angry, put-out people out there, perhaps if they were to develop food allergies they would refrain from eating outside their home. But if they are ever in the position where they want to be social and go out to eat and what they eat could hurt them, I hope for their sakes they receive the correct information.

Grateful...

Even with my currently muted sense of smell, I can tell good things are happening in our kitchen right now. The plague of November 2009 continues to lay siege to my lungs and my productivity, which could spell trouble for the Thanksgiving dinner we are hosting. (And no, it is not H1N1; I was able to get my vaccine at a recent lung appointment.)

Luckily, my husband loves to cook and knows the value of early preparation when we’re in the midst of an infection. Gluten-free corn bread is cooking, sweet potatoes are roasting for a bourbon-walnut sweet potato mash, and other assorted casseroles and desserts are in various stages of completion.

Like so many others, I find it impossible to avoid reflecting on the things for which I am grateful this time of year. I can’t help noticing that these annual November posts invariably include food, like this one on the evolution of a gluten-free Thanksgiving.

Holidays are largely defined by the traditions we have, and particular foods and recipes form part of those traditions. I am grateful that over the years we’ve been able to blend long-held traditions with gluten-free ones. I love that my parents are excited to make a side pan of gluten-free stuffing to go along with their famous dish. I love that I addition to the usual pies, we will have a gluten-free almond cake with homemade cinnamon ice cream that tastes a lot like eggnog. (I also love that my husband made said ice cream in between days of running errands, cleaning, and ferrying my nebulizer from room to room.)

And I love that being gluten-free on Thanksgiving isn’t a big deal. In our group we have celiac, lactose-intolerance, allergies to peppers, onions, nightshades, cheddar cheese, and chocolate, as well as the challenges of type 2 diabetes. We all have some safe foods and some foods we know to avoid, and we will all be satisfied by the end of the meal.

It has been a long year, one filled with exciting developments but just as many challenges and setbacks. It has been a long year for so many people around me: illness, loss, economic stress, uncertainty.

I was thinking about all of this the other day when I skimmed some of the e-mails I get from an online disease community for celiacs. I don’t participate much, but I appreciate the advice and recipes many group members offer the newly-diagnosed. Usually people are pretty upbeat, but there’s one voice that is consistently negative. Work dinners, picnics, holidays, restaurant trips, etc—the focus is always on what this person cannot have.

I know sticking to a gluten-free diet can be expensive and difficult, and I know it is a huge adjustment. I know that adjustment is a lot more challenging around the holidays, especially if you’re newly diagnosed. Six years ago, I was diagnosed days before Christmas. Try being gluten-free for a mere four days when you’re not sure what is safe and trying to eat at an Italian Christmas Eve, where six of ten entrees contain pasta and the other four have flour of some kind.

Nothing says bountiful Christmas dinner like a plate of olives and peppers from the antipasto. So I get it. I really do.

I only wish I had the grace and eloquence to reply to the negative posts along these lines: While I am not grateful I have celiac, I am grateful I know I do and can do something to feel better.

That was the essence of the reply someone posted last week, and it is a sentiment that looms large in my thoughts these days.

I am grateful that in light of other medical problems that do not have such an immediate and definitive treatment plan, I have something I can manage with my diet. I am grateful that I know what’s going on (especially since I never presented with GI symptoms) and that I am no longer throwing my autoimmune system into a frenzy by eating foods I cannot process. I have control over something, I have choices and options I can make every day to help improve my health.

As many of you with chronic illness can attest to, that does not usually come easy.

With viral plagues and flu fears and feeling like no matter how hard I try to get air it will not come, having that kind of knowledge and control is even more important to me. And knowing people around me are dealing with far more right now, emotionally and physically, I realize how precious this is.

As many of you know, I’ve spent many holidays in the hospital. Usually, just being present and accounted for at the Thanksgiving table is enough for me. This year, knowing the people who matter to me will be there, despite a lot of serious challenges and stress in their lives, is what counts.

We might not be able to eat everything there, and we might not all feel too wonderful. But we’ll all be at the table, and that’s enough for me.

Are We Being Too Tolerant of Gluten-Intolerance?

“Are we being too tolerant of gluten-tolerance?” is the question Slate’s Daniel Engbert explored earlier this week.

Now, I have a lot of thoughts about the points raised. However, I also have a lot of thoughts about another post I’m writing on disability vs illness, the interviews I’m doing today, and all the stuff I’m supposed to pack for a “working vacation” that starts tomorrow, so I’m going to tackle some of the major ideas briefly.

Honestly, based solely on the headline I thought the piece was going to antagonize me (proof it’s a smart headline, no?) but I found myself agreeing with some of it. Of course, where I found myself nodding in agreement were the most obvious distinctions, but they’re important ones nonetheless. Using Elisabeth Hasselbeck’s best-selling book The G-Free Diet and the booming gluten-free food industry as context, Engbert establishes that:

“The lavishing of attention on wheat alternatives is wonderful news to the sufferers of celiac disease, for whom any amount of dietary gluten can inflame and destroy the lining of the small intestine." Naturally I agree with this; in the five years since I was diagnosed, both awareness and availability of GF products has really increased. More restaurants have GF options, labels are more clear, and more GF alternatives line the grocery store shelves.

(As an aside, does anyone with celiac disease actually use the term “G-free” in public? No seriously, I’m asking.)

Yet I don’t think I’m the only one out there who has witnessed the downside of the popularity of eating GF. For example, because it is known that people without celiac are opting for the GF lifestyle anyway, there can be less urgency about making sure meals in restaurants are actually GF—the occasional eye roll or dismissive glance that means the person I’m talking to half-wonders if I’m avoiding gluten simply to lose weight or something.

I should add here that Engbert makes the distinction between celiac disease and gluten-intolerance pretty explicit; it’s the people who reside on the spectrum of intolerance who don’t have the full-blown autoimmune response to gluten but feel better when they remove it he’s worried about:

“I'm all for people eating what they want, but lately I've started to wonder how gluten intolerance might relate to a more general anxiety about food… Any kind of restrictive diet can help alleviate gastrointestinal distress. If you're paying more attention to what you eat, there's a good chance your symptoms will lessen.”

He goes on to say, “It's well-known that our digestive system adapts its secretions (rather quickly) to whatever we're eating.” By extension, then, removing all products with gluten and then consuming some after a prolonged period could make you feel sick, thus enforcing the idea that you are gluten-intolerant.

(I can vouch for the fact that my husband went GF for a month to see what it was like and when he gorged on starches his first meal “back” he felt awful. Was gluten a shock to his system, or just a sign he overate in a way he didn’t when he was eating GF foods? I’m not convinced either way, but I know he felt pretty miserable.)

I know a type 2 diabetic without celiac who removed gluten from his diet and experienced dramatic reductions in his insulin needs—was it because he was somewhere on the sensitivity spectrum and removing gluten improved his digestion and absorption of foods and that somehow influenced his metabolism of insulin? I’m not an endocrinologist, so I can’t say. But could it be something as simple as removing gluten meant removing the more processed white starches and carbohydrates that spiked his sugar?

I don’t have the luxury to “slip up,” nor am I qualified to dissect those who are gluten-intolerant—we face many of the same challenges and gains in eating GF.

I guess my point is, to me, it doesn’t matter—in my example of the diabetic, the end result was that he felt better and needed less insulin. That’s the important part. If the gluten-intolerant have their own health improvements, that's a good thing.

I live GF and have no regrets—I eat whole, fresh vegetables, complex grains with plenty of fiber like quinoa, and consume no processed foods. It is not without sacrifice or expense, but in many ways, I see it as a much healthier way to prepare and consume food. If others choose to do the same and experience the same benefits, that’s great.

And here’s where Engbert’s argument gets a bit more interesting. He parallels the rise of eating GF with other diet trends, like Atkins, at the same time admitting he doesn’t think people who choose to go GF are simply secretly trying to lose weight:

“When a restrictive diet becomes an end in itself, we call it an eating disorder; when it's motivated by health concerns, we call it a lifestyle. It might also explain the relationship between food sensitivities and fad diets: People who are intolerant of gluten or lactose get a free pass for self-denial.”

Not to use the word “sensitive” too much, but I am particularly sensitive to this association between elimination and health. After all, I chose to go dairy-free even though I’m not lactose-intolerant because it helped decrease mucus production. That got a few eyebrows. And when I eliminated sugar and yeast for nine weeks due to my intense antibiotic regimen that wreaked havoc in my GI system, I got more eyebrows.

I consider these moves wholly health-motivated, so my choices would be classified as “lifestyle” ones by Engbert’s definition. But from the outside, perhaps they appeared otherwise to other people?

At the end of the day, I can’t worry about or judge the dietary choices others make or what they think of mine, so I’ll leave this where Engbert does—all this awareness is truly a good thing for celiacs, as well as the people who have celiac but have not been diagnosed yet but have a better chance of it now.

Do I think we're "too tolerant?" No. Do I think extremes exist in every situation? Sure. Is that a reason to decry real progress for so many people? No.

Making Gluten-Free Eating Easier

My recent foray into eliminating sugar and yeast from my diet have me thinking a lot about what I choose to put into my mouth. As an almost six-year veteran of living gluten-free, I’m used to doing that, of course, and I’ve written before about how I view my celiac diagnosis as full of opportunities, not restrictions.

While there are always occasional missteps or awkward experiences, after all this time I don’t stress too much about what is safe and what isn’t. I have my regular favorites recipes and my grocery store routine down pat. I’m comfortable asking questions in restaurants, and know to look for the “secret” sources of gluten that can make me sick. At this point, I think one of the more challenging parts of celiac disease is making other people comfortable and familiar with what I can and can’t eat. I don’t want relatives needlessly worried about giving me roast potatoes or rice (for some reason, the fact that they are starches used to make them think they weren’t safe), and I don’t want to cause extra work or concern for them.

I’m fortunate to be able to say that my friends and family are wonderful—they want to include me, and often branch out into things they might not have cooked before because I’m around, like risotto or polenta. They do their best with what I know is a steep learning curve.

That learning curve—the same one newly diagnosed celiacs also face—just got a little easier. I recently had the change to speak with the lovely people at Zeer, which is a “food information resource that makes it easy to find safe food. It helps people save time, stay safe, learn particular diets and live better lives.”

In response to the active, passionate gluten-free community on their review site, Zeer created Zeer Select, a subscription services for gluten-free shoppers that launched just a few weeks ago. The services includes a database of 30,000 food grocery products (a number that will keep growing), each labeled with a gluten-free safety status. (Not to worry—each product is evaluated by a team of physician and dietician experts to verify the safety and accuracy of the labels.)

Products are coded as either being gluten-free (safe), appearing to be gluten-free, or containing gluten. The ingredients for each product are included, so if a product is not specifically labeled gluten-free by the manufacturer but none of the ingredients are known to have gluten, the consumer can read them and make the decision to purchase it or not. Of course, for products that are not safe, the actual source of the gluten is noted. Users can search by food type, brand, or UPC code, and features like a list of suggested alternatives for “unsafe” foods are really helpful.

First of all, I always like to hear when a company pays attention to its customers and responds to their needs. Zeer did not start out customizing in gluten-free services but saw how engaged its gluten-free members were and things emerged organically from there. Secondly, Zeer Select fills a void in the online gluten-free world. Often, when you Google gluten-free foods, lots of recipes, blogs, and commentary pops up—which is great, but if you’re looking for grocery items, it is much more difficult to isolate the answers to your questions.

I spent some time on Zeer Select, searching for specific brands and specific items, like salad dressings, and found it really easy to navigate. If you’re interested, click on over and you can take a tour, too. The service is $14.95 a month, and they plan to build out the intelligence to include other specialized plans, like dairy-free, casein-free, and vegan diets.

If you’re newly diagnosed and not sure what you can and can’t put into your grocery cart, you will learn a lot from this service. But as I think about the ups and downs of the past six years, I realize it’s not just the newbies who benefit—the people around us who want to learn and cook for us and with us do, too.

(Food Allergy Buzz wrote about the launch, too—check it out to hear what others are saying.)

While we’re talking about celiac disease, Scientific American just published an in-depth article about celiac disease and autoimmunity—definitely worth the read!

Thank Goodness I Like Vegetables

I realized just how much my lifestyle has changed over the past few years when a recipe for a weekend dinner party called for sugar, and I didn’t have any. Nor did I have artificial sweetener, artificial sweetener that looked and tasted like sugar, or anything else sweet, save the maple syrup we bought for when my niece slept over several months ago.

On the one hand, I felt a bit domestically delinquent. We usually had some on hand for company, but beyond that, isn’t sugar one of those staples every kitchen needs? Then again, we don’t usually have flour of any kind, either.

As I’ve written before about the evolution of my gluten-free life, I’m more the “explore naturally gluten-free foods” type of girl than I am someone who looks for gluten-free versions of “normal” food—but I recognize that’s just personal preference and that each person needs to do what makes the most sense for his/her circumstances.

Lately, it seems like celiac disease is popping up everywhere. Of course, there’s a certain celebrity’s newly published book stirring up a lot of comments, but there’s more to it than that. The other day at Gluten-free Girl, Shauna mentioned how many new products and companies are now on the market offering gluten-free baked goods, mixes, etc. In my own area, I’ve recently discovered that restaurants like Papa Razzi and Charley’s offer gluten-free accommodations, and I love hitting up regular spots like Jake’s Dixie Roadhouse, which has a GF menu and strict cross-contamination measures.

What’s more, the amount of people around me who know what celiac is or have just gotten diagnosed with it is growing.

“Do you think it’s like food allergies, where more and more people get celiac now?” someone asked me.

“Honestly? I’m no expert, but celiac is so often missed because it is so tricky to diagnose. I think the reason more people are now told they have it because awareness has grown; patients think to ask their doctors about it, and doctors think to check for it, even when “classic” symptoms might not be there,” I said. These are people who may have suffered for years without knowing why.

Anyway, all this is to say that much has changed since I was first diagnosed five and a half years ago. I can’t believe it has been that long. I’ve learned how to make a lot of new foods, I go out to eat without fear or hesitation, we’re growing our own vegetables in our yard, and I’m even in a supper club whose members view the challenge of GF cooking as a good one.

But now there’s a wrinkle. No, it’s not dairy; I cut that out two years ago. No, it’s not processed food; that went out the window a long time ago.

I’ve mentioned before what an soul-crushing, lung-battering winter I had this year. (Okay, maybe slightly dramatic, but it was Not. Good.) As a result of that seven-month siege, I am on a very aggressive, very long-term suppressive course of rotating antibiotics. I don’t talk about it much because there are so many strong opinions about these medications out there, and yes, they are overused by people with colds and yes it’s a problem…but for people like me, they are, quite literally, a lifesaver. Not only do they save lives in acute infectious situations, but they can also help slow down irreversible lung damage. If it’s a choice between several weeks a year as an inpatient and trips to the ICU and suppressive treatment that actually gives me some quality of life and helps control the many infections I get, it’s a no-brainer.

But my aggressive treatment is not easy on the body, most notably the stomach. As evidenced by lots of GI issues and a lovely film on my tongue, my long-term use of these meds has given me candida, an overgrowth of yeast in the intestinal tract (it happens when meds kill the healthy gut bacteria) that spreads throughout the body. Lovely.

The treatment? Well, coming off the meds isn’t an option right now, so I’m trying to follow the candida diet, which essentially means eliminating all sources of sugar, yeast, and fermentation in the diet. Now, clearly I don’t eat a lot of sugar but it’s more complicated than that: naturally occurring sugar in fruit is out; vinegars, salad dressings, honey, tomatoes, white starches…all out. The list goes on, trust me. Again, not the biggest deal since I don’t eat some of this anyway, but if you’ve read Life Disrupted you know how I feel about my honey mustard dressing.

Now, my lunch of green beans and chickpeas is a bit sad and lonely.

“Um, so what do you eat?” a friend asked, knowing I limit animal protein to once a day.

The list is short.

When I was first diagnosed with celiac, I never went through an angry stage or mourned all the things I couldn’t have; I was ecstatic there was something wrong with me I could actually fix. (This doesn’t happen often in my world.) I’m channeling that sentiment to this latest dietary challenge—I feel pretty crummy so if taking these steps can improve things even a little, it’s totally worth it to me.

But if you have any pointers, I’m listening.

What You Eat and How You Feel....

What’s your cooking personality?

I took a quiz in the NYT’s Well blog recently and my results were a mix of healthy and innovative, meaning I like to experiment and rarely use recipes, I enjoy using fresh ingredients and spices, and I rely a lot on fresh vegetables and healthier proteins. The point of the post was to discuss how strong an influence the person who buys and prepares food has over household consumption, which I find interesting as well as totally logical.

(I should add here that several days into a lingering stomach flu, I am taking a huge leap writing and even thinking about food. Pedialyte and tea is more my speed right now.)

Anyway, in my more normal solid food state, we have a team approach to buying and preparing food because we both enjoy cooking and we each have complementary goals: I want lots of greens, lots of fiber, and a lot of heat; my husband is especially particular about preparing quality proteins and is always looking to try new preparation methods and new combinations.

Our meal planning has evolved a lot since we first met and started cooking gluten-free; since then, I’ve eliminated dairy and gotten a lot more adventurous, and we’ve both become committed to eliminating processed food. If I think about that in terms of the article on cooking styles, I’d say we’ve both influenced each other’s meals, though in different ways.

I realized our overall grocery store expedition can be boiled down to “Lean proteins, preferable whatever’s on sale, and vegetables.” In addition to lots of herbs and spices, we have lots of vegetable and chicken stock on hand, as well as bulk quantities of quinoa, brown rice, polenta, and risotto. As long as there’s some olive oil and garlic in the house, we’re set for the week and can do many different things with these core ingredients. (Of course we buy other things to supplement breakfast and lunch, but this is the crux of it.)

I found myself telling one of my doctors this last week after a strategy session to map out a way to control my dubious immune system and lungs these days. He was very interested.

“Do you notice you feel better when you eat certain things and worse when you eat others?” (Keep in mind, “feel better” in a lung doctor’s office means, “How is your breathing?”)

I mentioned that I gave up dairy voluntarily to cut down on mucus congestion and that I could tell it made a difference on the very rare occasions I’ve eaten it since: I am much more wheezy, and I cough a lot more. But beyond that, I haven’t really thought about how specific foods may or may not influence inflammation in my airways. I’ve been so focused on the macro—put good things into your body, and hopefully good things will happen.

So my new challenge is to be a more conscious eater, to slow down and think about how I feel and how I am breathing after different meals. It takes time and effort to eat gluten-free, whole foods and keep it economical; if I can parse out added benefit for my lungs themselves, then that’s great.

What about you? Have you noticed you react differently to certain foods (excluding any food allergies/intolerances, of course)? And if you take the quiz, don’t hesitate to share what your cooking personality is!

* * *

In other health-related news, I’ve written before about the effort America’s Agenda Health Care Summit Conversations is making to bring consensus to health care reform. Now, there’s a way you can participate in the movement as well. They are sponsoring a virtual marchto let Congress know how health care costs affect your daily life. You can join the Facebook page, send a photo of yourself, and tell your story. We can’t all be in Washington, but this is one way to get your voice heard. Check it out!

Food Matters...

This was the post I planned to write:

“I have to confess, I haven’t read Mark Bittman’s Food Matters yet, but I am intrigued by what I read in this review. A 'Guide to conscious eating' seems especially appropriate this time of year, when we tend to focus on eating well and starting new habits.

As a celiac, I am gluten-free by necessity, and as someone with chronic, progressive lung problems, I am dairy-free by choice. As I’ve written before, I no longer see this lifestyle as one of food exclusion but as one with a different set of possibilities. There is no question I feel better without gluten, and if the removal of dairy has made my congestion even a little better, it’s worth it to me.

I don’t plan on altering this combination too much, but I’ve thought a lot about how I want to embrace the spirit of change in the New Year. Over the past few months, I’ve shifted towards less animal protein and more plant sources, until somehow I found myself not having any animal protein until dinner, and sparing amounts at that. When I read how Bittman and a colleague embarked on a 'vegan until six' endeavor with limited simple carbohydrates to improve their health (there are lots of environmental reasons behind his choices too but I am focusing on health), I thought, 'Huh. Who knew it had its own catch phrase?'

It’s really not too much of a shift from what we’re already doing in our household—planning meals in advance, making things from scratch in larger quantities for later use, shopping the perimeter of the grocery store. In essence, I’m continuing to swap out my midday protein for a plant-based one. But the difference is that now I am doing it more consciously. High cholesterol and cardiovascular disease run in my family, and I figure I have enough issues as it is.

I know many of you out there have made lifestyle changes and dietary changes that aren’t necessary for medical conditions (like going gluten-free if you’re celiac, for example) but have made a big difference in your health and in controlling chronic conditions. What has made the biggest difference, and do you have any regrets?”

So that was the post I had set in my mind until I received an e-mail about Share Our Strength’s “Operation No Kid Hungry” campaign to raise funds to help end childhood hunger and encourage Americans to hold food drives within their own communities. According to Share Our Strength:

“This campaign responds to President-elect Obama's call to
action for corporations to serve our nation's communities and builds on his commitment to end childhood hunger by 2015.”

I got to know this organization when I wrote a newspaper article on Operation Frontline, a nutrition education program for low-income families. It was then that I really started to see that conscious, healthy eating can be affordable and manageable.

Share Our Strength is running the campaign to coincide with Martin Luther King, Jr. Day, and there are two ways we can all get involved:

1. Text "SHARE" to 20222 on your mobile device to donate $5. AT&T will match all text donations up to $100,000.

2. Holding food drives within their communities beginning Monday, January 19th, which is Martin Luther King Day and a national day of community service.

Visit Share our Strength for more details.

And then I thought about how much food really matters, and how lucky many of us are to have the luxury to decide just how conscious our eating can be.

The Evolution of a Gluten-free Thanksgiving

This is the week of food posts, no? This is also the first time I’ve had any real interest in the actual meal part of Thanksgiving in years. We’re hosting it, and even before we pick up the turkey and other fresh ingredients next week our pantry and refrigerator are already getting full…and I’m really excited to prepare it all.

Honestly, not being able to eat a lot of traditional holiday dishes has never been a big deal to me. I ate my plain turkey, my peas, and called it a day. I didn’t compare gluten-free stuffing recipes or gluten-free pie ingredients, and I didn’t ask for or expect special dishes. The stuffed mushrooms I always make happen to be gluten-free, and even though I’m now dairy-free and they’re no longer safe for me, I make them anyway—they are a crowd favorite.

From feedback I’ve heard from other celiacs, it seems like the hardest Thanksgiving meal is the first one after diagnosis when you’re still getting used to the gluten-free diet and missing favorite foods. I got diagnosed right before Christmas and spent that Christmas in the hospital, so I didn’t have option of acclimating my condition to holiday traditions—clear liquids are neither festive nor gluten-y. By the time the next Thanksgiving and Christmas rolled around, I was so focused on keeping my lungs stable and my body out of the hospital that what I ate seemed inconsequential. I get the frustration or even anger people may feel when they need to give up certain foods, but for better or worse, that hasn’t been my experience.

Besides, going GF made me feel a lot better, and that trade-off was always worth it.

And in a way, not much has changed. Considering last Thanksgiving my jaw was frozen shut with an infection and I could only have broth through a straw, I’m happy just to be able to chew this year. I’ve always been a lean protein and green vegetables kind of girl, and that remains true on Thanksgiving. I know there are all sorts of approaches in terms of eating gluten-free and it’s just a matter of preference. Mine has always been to focus on what is naturally gluten-free and explore those possibilities. It’s not the only way, but it’s my way, and that’s the spin we’re adding to the traditional family menu this year.

I want my mother’s famous stuffing at our table, just like I want the derby pie my husband loves, the ricotta pie my grandmother makes, and the buttery potatoes my brother considers a deal-breaker. I want everyone to have their favorite things.

But I’ve started to make an effort to have my favorites, too. I don’t miss or resent what I can’t have but I do want to share what I can have, so we’re adding small touches to the meal. We’re making the roasted Brussels sprout hash we both love, and we’re adding cranberries and toasted almonds. We’re making naturally GF cornbread to go along with the rolls. There will be no GF dessert option because I don’t eat dessert, but there will be plenty of coffee and perhaps the port that several of us like to drink.

At the end of the day, what I can or can’t eat is much less important to me than being healthy enough to be at the table and enjoy my family. I said it last year but it’s just as true for me this year—it’s the people at the table who create holiday memories, not the food.

(I do hope they like the roasted Brussels sprouts, though!)

Looking for ways to customize your gluten-free Thanksgiving? I’m not much of a baker so don’t listen to me. Trust Shauna at Gluten-free Girl, who has compiled a list of sure-fire recipes.

Celiacs aren’t the only ones who face challenges in the holiday season—diabetics and people with other conditions that mean dietary restrictions have a lot to juggle, too. There are several people with diabetes in my family and lots of friends with food restrictions, and I know it can be a tricky time for them, too. Check out the holiday sweepstakesover at Diabetesmine.com. Share your diabetic holiday tips and strategies and you could win a ton of cool prizes.

Stay tuned for a post that’s less about what we eat and more about the giving thanks part of Thanksgiving…

Gluten-free Eating on the Cheap

I’ve been working on a project these past couple of weeks that has forced me to pay even more attention to the cost of food during these tight economic times. This article on what a modern depression would look like suggested a possible upswing in eating fast food and starchy, processed food because they are cheaper, and I couldn’t help but think even more about the future of healthy eating.

As a patient with celiac disease, I’ve grown used to the fact that eating gluten-free is expensive. Whether it’s dining out or cooking at home, there’s no way around the fact that many of the cheaper items out there are off-limits.

The trade-off, of course, is that fresh and/or whole foods are healthier, and my meals are higher in fiber, lower in sodium, and much more diverse than they would be were I not gluten- (and dairy) free. While sticking to this lifestyle will never be inexpensive, there are definitely lots of things GF shoppers (or anyone with a limited diet) can do to maintain their diets without breaking the bank. Here are some strategies to keep in mind as budgets shrink and costs increase—none of them are earth-shattering and they certainly aren’t the only ones out there, but they are things I think about and try to practice regularly:

1. Personally, I try to stick to foods that are naturally gluten-free, rather than buying specialty pre-made items (bread, pizza crusts, pasta, etc) that approximate products with gluten and cost more. I’d much rather buy a bulk bag of brown rice or risotto and have that with my stir fry or as a side dish. Same thing with polenta—it’s cheap when you buy it in bulk and is really versatile in terms of spices and mix-ins.
(Note: I’m not much of a bread/baked goods kind of girl, but I know celiac patients get good results with breadmakers, and that it’s cheaper than buying pre-made GF bread).

2. We like to make soups and turkey chili a lot, and buying dried beans and lentils makes a lot of sense if you’re going to use those ingredients often. Certainly store-brand canned beans aren’t too expensive, but they can have more sodium than I’d like and they’re still not cheaper than dried beans. (Just make sure you give them plenty of time to soak. The infamous “crunchy” turkey chili of July 4, 2008 taught me that lesson.)

3. Plan meals around vegetables in season—not only does it make for more creative meals but you’ll spend less. If your recipes call for vegetables not in-season, frozen vegetables are more affordable and have many of the same health benefits as the fresh kind.

4. Make the most of every ingredient you buy and purchase items that can work in several different meals/recipes. For example, we’ll buy a whole chicken when we see it on sale and roast it, using some meat for that night’s meal and setting aside portions to use in soup and on salads later that week. Then we take what’s left and make a huge pot of chicken broth out of it. We use some of it for soups that week, and depending on how much we make, we freeze containers of it to use when we make risotto or polenta and want the depth of flavor broth adds over water. (You can find store-bought broth that is gluten-free but it’s often too salty and I really prefer the taste of homemade broth.)

5. Lastly, it sounds obvious, but pay attention to sales and specials. If you’ve planned out meals with one type of protein and another is one sale, think about substituting. And of course if you see GF specialty items or proteins on sale, stock up on them and keep them in the freezer. Take-out can really add up and is often limited in terms of GF-availability, so give yourself options.

While they are not major changes they can really make a difference for anyone dealing with dietary restrictions. If you’re looking for more ideas, Gluten-free Mommy has a great post on eating gluten-free frugally.

On Interstate Dining, 80s Music, and Caregivers…

This weekend we completed our first road trip of summer 2008—twelve hours to Michigan for a family function, and twelve hours back just in time to pick up the dogs at their kennel and get to work.

Radio stations and rest stops are the only things that break up the monotony of long car rides—well, that and crossing the Canadian border each way. I know all about the tips for eating gluten-free while traveling in the car, and I dutifully pack nuts and trail mix, bottled water, and fruit.

(I’m irrationally militant about consuming greens at every meal, and after doing this route for a few years now, I can vouch for the Lee, Massachusetts service area with a Fresh City and the Pembroke, NY service area with a Fuddrucker’s as A Chronic Dose-approved salad stops.)

While we may have stocked up on gluten-free snacks, we forgot to bring our iPod adapter or CDs so it was all radio, all the time. In a freakish coincidence that defied station, state, or even country, every single different station that came in played 80s tunes—REO Speedwagon, Chicago, and lots more. Seriously. The songs totally brought me back to my childhood, to driving around in my mother’s cream station wagon, my legs sticking to the leather interior in the summer’s heat.

But we heard one song that has a particularly vivid and visceral memory: “The Power of Love” by Huey Lewis and the News. Whenever I hear it—and this past weekend was no exception—Bam! I’m five years old, a couple of weeks into my several-week stay in isolation due to a serious staph infection spreading from my ears to my brain. It’s brashly sunny in my white room overlooking the Charles River, and I am bored.

There was a playgirl on my floor named Mimi—I’m sure that wasn’t her official title, but that’s what I called her in my head—and since I couldn’t go to the playroom with the other peds patients, she brought special toys and games to me. One time, she brought a small radio and played that song. I still remember her strawberry blond curls and pale skin, still remember the effort she made to bring a little bit of fun into my life.

(As an aside, it’s no irony that the summer before college I volunteered with the Child Life department at Boston Medical Center, where I learned how to engage in therapeutic play on an in-patient floor…and it’s no coincidence that I loved it.)

Anyway, all of this road trip reminiscing is going somewhere, I swear. Clearly I had hospitals and caregiving on my mind this morning when I read this post on Running a Hospital, a note from a family member of a hospital patient who wanted to highlight the exceptional care certain nurses and physicians gave her relative.

I’ve always said it’s the nurses who make or break a hospital stay, and I firmly believe that. They are the ones who attend to our immediate needs, who spend a lot of time reassuring family members and answering questions, who are our advocates and caregivers, and whose gestures, however big or small, can make such a difference in our quality of life as inpatients.

I’ve had nurses who’ve stayed late to give me chest PT when respiratory therapy couldn’t make it, or who brought decorations and festive platters of baked goods and flowers from their own holiday celebrations to cheer up the floor. I’ve had nurses who’ve made me laugh when I desperately needed to, who’ve made me feel comfortable despite extremely uncomfortable symptoms and circumstances, who’ve treated my friends and family as warmly as I would.

I’ve also turned a sharply trained eye to the nurses in charge of the people I care about. Like the letter-writer in the post I mentioned, I’ve appreciated—and remembered—the nurses who soothed their anxiety, prioritized their worries, and responded to their concerns and fears with dignity. I’ve taught several sections of nursing students, and I am always impressed with their passion and enthusiasm for patient care, passion they bring to their classroom discussions and their research projects.

So while the weeks I spent in isolation as a little girl aren’t the best memories I have, certainly, the memory that classic 80s tune conjures up is a good one—it reminds me that for however overwhelming the hospital can be, there are doctors, nurses, physical therapists, child life specialists, and many others whose actions remind us we are people, not solely patients.

***
Speaking of nursing, interested in basic information on the nursing shortage or chronic illness nursing programs? Check out these links. Just a little bit more summer reading…

Changing the (Chronic) Routine

No matter who you are or what you do, you have some sort of routine. Whether it’s when you exercise, when you take your morning coffee break, or what you read during your commute, there are certain rituals that prevail and structure our chaotic, multi-tasking days.

Personally, I crave routine and really can’t function without it. I get all antsy and agitated, like I’ve had too many Red Bulls and haven’t worked off any of the energy. Given my propensity for medical mishaps and rapid changes in health status, this dislike of disruption is unfortunate, but I roll with it as best I can. As I’ve written before, it’s impossible to parse out how much of this is part of my inherent personality and how much of it is a response to a lifetime of illness, but at this point, the origin doesn’t really matter.

When you have chronic illness, the notion of routine takes on even more significance, and we each have carefully constructed disease management rituals. For example, I start my day with an early morning chest PT session with my physical therapist—while I’m not exactly excited for a vigorous chest pounding at 6:45, if I make coffee it’s tolerable for both of us—followed by taking my pills and using my inhalers, peak flows, and, if I need it, my neb. Then I get to work.

Of course that’s just an example. I know diabetics who have their early morning blood sugar testing routines down to a science, and arthritics or people with other pain conditions who need to do certain stretches and warm-ups before they can tackle the day. In this context, routine is a good thing, it means we don’t forget to take pills or do our exercises or anything else that needs to be as rote as brushing our teeth or taking a shower. (Again, I really believe many of the universal aspects of living with a chronic condition outweigh disease-specific differences.)

Though I’m somewhat loath to admit it, there is definitely such a thing as too much routine, especially when it comes to nutrition and cooking. I’ve discussed how instrumental my husband was in helping me broaden my culinary horizons when I was first adjusting to eating gluten-free, and we often try new places and new foods.

But lately we’ve gotten into a bit of a cooking rut. There’s only so many nights salad, veg, and something grilled can taste great without tasting repetitive. As a gluten-free, dairy-free eater I am all about the fresh produce and whole foods, and I pack a mean punch with spices, but still. I looked at our grocery list and realized we buy a lot of the same vegetables and fruits every week. How much broccoli can one couple reasonable expect to consume and be satisfied?

I think when you have any sort of condition that restricts your diet, from celiac disease to IBS to Crohn’s, once you’ve experimented and found a “safe” group of foods, it makes sense to operate within that safe zone. (If it ain’t broke…) However, there’s something to be said for lateral variety, new iterations of things we already know are safe.

So when I came across this post from Alicia about Boston Organics, a company that delivers fresh (and often, locally-grown) vegetables and fruits to your door, I got excited. As she posts, the service makes a lot of sense for people with chronic illness who may not always have the energy to do big shops—they do all the heavy lifting! For people with sensitive GI systems who have very specific needs, it’s especially useful—you can choose which items you never want to receive and then select acceptable replacements.

(And for us, the smallest basket costs about what we’d pay for our weekly produce anyway, so financially it made sense).

I was excited by the prospect of a different array of produce each week, and that’s been the biggest benefit so far. Already we’ve done lots of things with kale, learned that overcooked leeks get slimy, and made wonderful cucumber salads, fruit salsas, and other side dishes we wouldn’t have tried otherwise. It keeps our menu planning diverse and our palette challenged, and that’s really important when you live with any kind of dietary restriction—you never want to feel restricted.

We even inspired to make sushi on our own last week, armed with cucumber and green onion from our weekly delivery. (And, of course, safe rice vinegar and gluten-free soy sauce!) It required more time, energy, and money than we typically have to spend but it was really fun and something we’ll definitely do again. Here are a couple of pictures:






Like I said, clearly we need routine to manage chronic illnesses. But it doesn’t hurt to change things up a bit, either. It’s a question of figuring out where we can build in flexibility, that’s all.

***

Speaking of changing things up, Loolwa Khazzoom had Sex in the City on the brain the other night (which worked out well for me) and it made her think women with chronic pain deserve their own camera! Check it out here.

On Food, Cost, and Cabbage--A Gluten-Free Solution for What Ails Us

Several things were swirling around in my head as I decided on this post:

1. My recent entry on the incidental expenses of illness
2. Worldwide strife over food prices and shortages
3. Around the world, May is celiac awareness month

Buying and cooking gluten-free food has always required more creativity, effort, and expense (all well worth it, obviously) but when the price of staples like milk, eggs, and flour make headline news, the gluten-free budget isn’t headed anywhere good either.

Two other things should be noted for their particular relevance to this post:

1. In addition to being dairy and gluten-free, I have the singular focus of an old lady when it comes to nutrition. Fiber? Can’t get enough of it. In fact, if my lunch and dinner don’t revolve around something green, I get a bit twitchy. And sodium? I’m as tenacious about cutting out extra salt as I am about incorporating fiber. I’d like to say it’s because I’m that dedicated to good health, but really I also just hate the way my rings get tight when I eat salty food. (My husband survives this regime by keeping a shaker of salt and a container of parmesan cheese at hand, but let me assure what I lack in salt I make up for with garlic and herbs).

2. I’m mildly obsessed with the culinary drama (more drama than culinary, sometimes) called Top Chef. Last week’s challenge involved cooking a healthy, inexpensive, and easy family meal. Now, I was all about Nikki’s one-pan chicken and veg extravaganza, but some of those recipes looked way too persnickety for a truly easy family meal. I mean, I love to cook and I don’t even have children yet and I think on the average Wednesday night when I want something easy (so, you know, I can go watch Top Chef) I’d lose patience.

So, let’s recap—food is expensive, gluten-free meals even more so, and time and convenience are at a premium. I now humbly submit my entry for an easy, inexpensive, gluten-free meal: Lazyman’s cabbage rolls, an homage to my husband’s Midwestern casserole-rich upbringing. His mother gave us her recipe and we added a few twists. It only takes about 10 minutes to prepare and while it does need to bake, it is a great dish to make ahead of time (let it bake while you watch late-night TV shows) and re-heats really well.

The short version: brown some ground turkey in a pan, add some rice and a large can of (no-salt added) diced tomatoes and one cup of water in with it, then dump the mixture in a baking dish and smother it with 4 cups of shredded cabbage. You can split the cabbage in half and layer the tomato mixture in the middle. Leave it alone for an hour and a half at 425 degrees and then you have a meal plus leftovers. You can use beef, of course. We just like turkey. We use 3 tablespoons of risotto, but regular rice works the same. Few ingredients, less cost, and it’s low in sodium and high in fiber. What’s not to love?

Like any good casserole-inspired dish it looks messy but tastes great:




Before I send you off to the grocery store, two quick updates: Grand Rounds is up at Suture for a Living, so definitely check it out.

Last but not least, the kind editors at Publisher’s Weekly gave Life Disrupted a really great review in their May 5 issue. Click here to read it online!!!

Incidental Economics of Illness

In a freakish turn of events, I dined out recently with two friends and I was the healthy one. (Well, okay, the visibly healthy one, if you must).

My two friends are preternaturally athletic, the type who run marathons and triathlons, who scale mountains on other continents, and generally amaze me with their natural ability and iron work ethic. Yet that night, they were wearing identical walking boots, having each suffered metatarsal injuries of some sort. One was even on crutches.

And there I was, not a sprained ankle, torn ligament, or broken bone to be had. Finally, I got to hold doors open and offer to carry bags for someone else.

Weird.

As our little trio limped down the city street, one my friends commented on the hassle it was being somewhat incapacitated.

“It’s really expensive,” she added, commenting on the number of cabs she’d had to take lately when the walk to public transportation would have been too much for her injured foot.

I nodded vigorously.

She’s right. Now, I realize just how far down on the priorities list this topic is. I know how expensive chronic disease is in terms of productivity and lost wages. I’ve seen Sicko; I know people with health insurance lose their homes and livelihoods, and even their lives. I know many other people do not have insurance, so a broken bone or X-ray or MRI can be a catastrophic cost.

I’m certainly not arguing any of that. But that topic is much larger, more unwieldy and complicated and frustrating, than what I am attempting to focus on here. So with that caveat in mind, shall we?

When you add up all the little expenses that come with being sick, those incidental little things that aren’t neatly categorized like co-pays and deductibles are, it really is costly.

Like my friend, I’ve definitely paid for many, many cabs when I’ve been too broken/adrenally-depleted/infection-ridden or otherwise worn out to take public transportation. I’ve paid tons of exorbitant parking garage fees because I couldn’t walk to a place or knew by the end of the event or appointment I wouldn’t be up to commuting.

Don’t even get me started on the number of non-refundable plane, train, theatre, and concert tickets we’ve lost money on when my health status changed quite rapidly and we had to cancel our plans. (Yes, sometimes people are understanding and work something out with us, but that is not the norm.) And of course there are the projects and jobs I’ve turned down because I’ve gotten too sick or landed in the hospital, but that’s another issue.

Despite our insistence on store brands and the fact we only buy enough for the meals we eat in one week, grocery shopping is more expensive because, frankly, most of the inexpensive food I cannot eat. Now, I do love me fresh produce, and all-natural, gluten-free grains, soymilk, and the $2 GF energy bars I grab to keep in my briefcase as a quick non-perishable snack, but they are by no means inexpensive. I’m sure all of you with various GI issues and dietary restrictions can relate.

Even dining out costs more than it might for the average person at the average restaurant because very often, the only “safe” menu choices beyond a small garden salad are the grilled fish entrée or the steak. No cheap middle of the road burger or sandwich or affordable domestic beer.

Anyway, I could keep listing all the ways illness sucks money out of my pocket, but I realize to even notice these incidentals is a luxury. It means the truly costly parts of life with chronic disease are under control.

It could be a lot worse.

(But I know you’re nodding your head and mentally cataloging your own incidentals list, too. It's okay.)

What Makes a Meal...

“Eat food. Not too much. Mostly plants.”

Clearly I’m not the first one to quote the opening lines of Michael Pollan’s In Defense of Food, or to see the logic in his argument that eating food is much different than eating the processed products that line most of the shelves in our grocery stores.

But I probably wouldn’t have been attracted to those lines—I might not have even read the book—if I hadn’t gone through such a major transformation in terms of what I think of as food and how it relates to health.

I thought about all of this when I came across a post from someone on a celiac listserv. The author said he would never go back to eating gluten, celiac disease or no, because his attitude towards food and cooking was so much healthier now.

I couldn’t agree more. I’d always been conscious of eating “healthy”—low-fat versions of everything I could find, heart-smart butter-like spread, even fat-free cheese (which, I admit, is an affront to the institution of cheese and consistently melted into an unappetizing pool of gooey yellow sludge. It was probably a subconscious part of my decision to give up dairy.) I bought pre-packaged, powdered low-calorie soups I added hot water to, convincing myself they made me full.

And then I was diagnosed with celiac disease and processed, pre-packaged foods were the first casualties.

Thank goodness.

I’m a label reader by proclivity as well as necessity, ever on the lookout for hidden sources of gluten in my foods. As such, I can’t help but notice how little time I now spend standing in grocery store aisles, poring over labels—after all, fruit, vegetables, fresh herbs, and meat/fish have pretty short ingredient lists.

Without being conscious of it while it happened, I became one of those people who, with the exception of canned beans and dog food, only shops the perimeter of the grocery store. Buying fresh, whole ingredients isn’t cheap, but since I’m not spending money on fake foods, the bill evens out each week. Now, we cook, rather than re-heat, a distinction I never would have thought about before.

Sure, I miss the sensation of biting into a toasted bagel, and the aroma of pizza baking can get to me. But going gluten-free forced me to look at what I eat, not just how much I eat or how many calories I ingest, and I wouldn’t go back to my outdated notion of “healthy eating” for anything. My life after diagnosis began as an odyssey of food exclusion, but I no longer see it that way.

After all, I take enough medications and put enough foreign chemicals in my body as it is. I certainly don’t need to add anymore into the mix.

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.