Friday, July 31, 2009

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.

Friday, July 24, 2009

On Listening and Judging

I’ve been thinking about the online patient community a lot lately. When I first started blogging a few years ago, I was in such a different place. Not only was I completely new to the concept of the medical blogoshpere (I was just a girl sitting in office hours who decided to start a blog), but I was quite new to many of my diagnoses, namely primary ciliary dyskinesia, bronchiectasis, and celiac. I was also in the middle of acute adrenal failure.

As I wrote in Life Disrupted, it wasn’t that getting labels suddenly meant I was “sick.” Certainly the twenty-three years, numerous surgeries, and months in the hospital that made up my medical history did that. Rather, the correct labels now meant the descriptions of my illnesses finally matched my experiences.

I had a lot to learn about my conditions, my treatment plans, and most of all, how I wanted to mesh what I needed to do for optimal health with my professional and personal goals. I learned a lot from my new doctors, from my own research, and from other patient bloggers. Each source provided a different type of information, from clinical summaries of prognoses and data points to personal, anecdotal wisdom from those living with the treatments and side effects every day.

I often write how much I believe the universal experiences of illness far outweigh the disease-specific symptoms: getting a diagnosis, finding a compatible doctor, struggling with employment or personal relationships, navigating the process of acceptance, etc. Based on the variety of different patient and disease blogs I keep up with, I am further convinced of this.

But there’s something else I’ve gained from reading and processing other peoples’ disparate stories: I think I am less judgmental than I used to be.

It’s easy to think your reaction to a diagnosis, your treatment plan, or you feelings about particular procedures or practices are the “right” ones if they are all you know or think about. Sometimes the differences are smaller, like maintaining a gluten-free lifestyle by choosing only naturally gluten-free foods versus learning how to bake gluten-free equivalents of “regular” food, inhaling a certain kind of saline in a nebulizer over another, or choosing one type of specialist to handle a condition versus another.

Sometimes they are more profoundly life-changing, like deciding to try an experimental procedure, putting a name on a transplant, or deciding which way a family is going to bring a child into the fold.

Regardless of the enormity of the decision, having access to so many interpretations and points of view has reinforced to me how important is to see things from many angles, to respect that what works for me might not work for someone else and vice versa, and to understand that we don’t always have to agree with other people say, do, or write, but that’s okay—it’s not always our call to make.

When you write things and post them publicly, you sign up for discussion and sometimes disagreement—that’s what makes blogging so dynamic, and what makes it a conversation, not a monologue.

But sometimes, in the offline world of the healthy that each of us spends so much time in, I want something different. I don’t always want a conversation, or debate, or input that becomes static in my brain. When I’ve done the research and had the talks and made a decision about my life or my health, I don’t want to have to explain or justify or defend.

Sometimes, I just want the act of listening to happen. And hopefully with listening will come understanding, but I’ll take just the listening for a start.

Does that make me a hypocrite? It might, and I accept that.

Every now and then, I wish there was a way to easily moderate the comments that happen in real-time…what I really want to say is trust me.

Wednesday, July 22, 2009

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!

Tuesday, July 14, 2009

Don't Know What You've Got Till It's Gone

I didn’t realize just how little energy I had as a result of my malfunctioning thyroid until I started taking thyroid medication—it was the kinetic equivalent of putting on a pair of eyeglasses for the first time. Everything was sharper, clearer, more focused.

It was a whole new world. Can you relate?

I didn’t realize just how awful (sluggish, congested, weak) I felt when I ate foods containing gluten until I stopped eating them, and immediately ditched the sinus headaches and malaise. Similarly, I didn’t see just how foggy and gross I felt eating foods with sugar (wine, fruit, vinegar, etc in my world) while on suppressive antibiotics until I eliminated all sugars from my diet and no longer got spacey or clammy or had palpitations.

Five years apart, these experiences opened up “whole new worlds” on their own—not without sacrifice, but totally worth it. Have you been there, too?

And of course, I couldn’t tell just how much the muck festering in my lungs clouded over everything and constantly made me feel awful until I started treatments that actually addressed it—postural drainage, chest physiotherapy, etc—instead of just throwing steroids at it and hoping the infections would subside.

It was a whole new world, one that didn’t automatically include multiple weeks in the hospital every year. Have you experienced that type of profound relief?

Sometimes you just don’t realize how bad things were until you do something to correct it, until things are different. When it comes to medical stuff, this isn’t always a bad thing. After all, if we can look back and compare a “before” and “after” favorably, then we’re doing something right; we’re treating the right thing or implementing the right therapy or making the right lifestyle choices.

And right now, I’m experiencing a related type of gratitude. It has been two months and change since I was acutely ill. That’s right, 10 weeks of relative normalcy, a huge step given that for the past year or two my stretch for bad infections had been about two weeks at the most. The few infections I’ve had have been much more minor than normal, so beyond the daily coughing/wheezing and maintenance, my various conditions have been really stable. Part of it is because my “bad” season is over (September-May), part of it is because I am out in public less during the summer (no commuting to germy college campuses), and I know a huge part of it is because of the very aggressive treatment I’ve almost completed.

Whatever the constellation of factors is, I’ll take it.

I forgot what it was like to be able to accomplish a lot of the things I want to do every day, or to make plans without hesitation or fear I’d just have to cancel, or to go to gym and know my lungs and body will hold up their end of the bargain. I forgot just how great and necessary it is to see friends in person, and be part of family functions, or leave the house and do fun things with my husband on the weekends.

Only now that the vortex of that long, awful winter has finally released me can I say that I didn’t realize what an effort simply getting through the routine of daily life was until it was no longer an effort.

And I love this feeling. It’s a whole new world.

Can you relate?

Thursday, July 09, 2009

An Issue of Scope

It’s been a more eventful few weeks than normal, what with last-minute
trips to New York
, visiting old haunts in Dublin, dealing with epic technology fails, and the assorted messiness and unpredictability of daily life.

Still, no matter how wonderful or frustrating these distractions are, they haven’t supplanted the main thing looming in my mind right now:

I’m having a bit of scope issue these days (and yes, here’s where the “writing” part of the writing blog comes in). For a huge project I’m working on, I’m asking a lot of questions I don’t know the answers to yet, questions I am not even sure have resolute answers…which is of course a great thing. After all, questions with known answers aren’t exactly intellectually stimulating.

However, the flipside to being really interested in something and asking lots of questions means that as soon as you locate research and information and begin to understand something, you realize how much more you need to know. And then when you find that next piece of the story, yet more doors open. It’s an exhilarating, exhausting cycle. I’ve gathered thousands of pages of journal articles, newspaper/magazine articles, essays, and statistics. I’ve read and annotated dozens of books, and am in the middle of several rounds of interviews with people all of all persuasions—patients, doctors, researchers, activists, policymakers, etc.

I can sit at my desk and quite literally be surrounded by mounds of resources, fully organized and categorized, and still not know exactly what I am doing. I know this is part of the process, I know this is how it should be, but sometimes I am overwhelmed by the sheer amount of information I have. Some of the research articles or carefully annotated passages from books I know I won’t end up using, some of it I know is still out there and is information I will need, I just don’t know it yet. How much context do I need, how much background is appropriate, how can I possibly touch on the surface of topics that are so big each could warrant a book on its own?

To talk myself of the ledge of information overload, I’ve had to remind myself that all of it matters, that it’s all shaping something bigger and eventually it will become clear to me how the pieces fit. None of the knowledge will be in vain. Seriously, I’ve actually said this to myself in my head. (What can I say? Writing can be an isolating existence at times. I’m lucky I don’t say it to dogs.)

It reminds me a little of one of my early experiences freelancing. I pitched Idea A to a newspaper editor, who teased out a smaller thread from my original idea and assigned me Idea B as the story. I jumped in, reading multiple books, wading through research, interviewing national experts, revising draft after draft. I became truly engrossed in the topic, and rattled off statistics and factoids without ceasing to anyone unfortunate enough to ask me about it. I’m fairly certain my neck flushed and I talked with my hands, which happens when I’m either nervous or really animated.

Then the editor decided it wasn’t the right fit for her page after all. Of course I was upset; no byline, no paycheck, no recompense for hours and hours of work. But I don’t regret the experience at all. I now know so much about direct-to-consumer advertising of pharmaceuticals, and I still have strong feelings about it. The foundation I got from that story comes in handy when I’m interviewing people for other stories, when I’m doing research for my book, when I’m reading and responding to other blogs and essays, when I’m thinking about health reform, when I’m watching television or flipping through a magazine and am inundated with bouncing balls, buzzing bees, or luminous butterflies.

And when I have classes full of pharmacy students? I don’t regret for a second all the knowledge I gained because it allows me to engage in a more meaningful dialogue with them.

So yes, I sometimes need to remind myself that all of this data that is flying around will settle, and that none of it will be in vain. In a way, it’s also similar to all the researching and trial and error we do when we’re narrowing down diagnoses or testing different treatments. Not everything is going to yield the exact answer you’re looking for in that moment, but eventually you find it will answer other important questions, too.

While I prefer concrete answers when it comes to diagnoses and treatments, despite its stresses I see the value in unraveling questions. When it comes to writing, I wouldn't want it a different way.

Thursday, July 02, 2009

When the Familiar Becomes Something New

We had a really interesting conversation in my writing group the other night. In sum, we discussed how when we’re younger (teenagers and young adults) we are often so willing to embrace—and actively seek out—new experiences. The older we get, it gets harder to break out of familiar roles and stereotypes; we cling to the routines and the responsibilities that define the lives we’ve been working toward.

But sometimes, isn’t it so great to experience something new, that adrenaline rush that signals we are leaving our comfort zone?

I’ve thought a lot about my friends’ comments the past few days. The night before we met up, I returned from a short trip to Dublin, Ireland, where I'd spent a year studying when I was in college. I was jetlagged but exhilarated.

Clearly going to Ireland wasn’t a “new” experience for me—I loved the city so much when I lived there, and despite changes in Ireland, many of its streets and pubs and quirks were as familiar to me almost a decade later as they were when they were my streets, my pubs, and my adopted quirks.

But in many ways, it was new.

You see, a lot has changed since I was a college junior. That was before I had my diagnoses of PCD, bronchiectasis, and celiac, before the failure of my adrenal system, before I really acknowledged the consequences of choices I made, before it got to be that literally every time I’m in a public place or a train, etc I get sick.

That year was sandwiched in between years of hospitalizations and trips to the trauma room or ICU, certainly, and I was definitely sick while I was there. (Backstory: after I was accepted to Trinity College Dublin, they required several doctors’ notes to prove I was medically stable enough to even attend.) I had a private lung specialist a few blocks from my apartment there, and I had my requisite infections. My backpack for a several-weeks’ sojourn across Europe was mainly filled with medications, and I got lots of questions at border crossings.

And being me, of course I broke my ankle and tore ligaments before my trek. I lost my cast and crutches the day before I left for Spain, and hobbled through Europe with a splint-type contraption that smelled terrible and made navigating hostel showers quite a production. (I had patient friends.)

Still, I went. Not just to Dublin, inhalers and pneumonia and all, but to many places in Ireland and Europe. I saw amazing things and became close to amazing people, many of whom I am lucky to have in my life all these years later. I thought I appreciated the experience fully while living it, and I think I really did know how lucky we all were.

Looking back through several years’ experience, though, I appreciate that year abroad so much more now. Of course there is the obvious reason—how often can you pick up and live in a different country, or pack a bag and see so many sights in so many different countries? It is the quintessential young adult experience.

But the patient in me appreciates it for deeper reasons. In the intervening years, I’ve said “no” to a long list of things: family dinners, birthdays, and holidays; weddings, showers, and baptisms; dinner plans, outings, and get-togethers with friends…and of course, travel. It seems almost every time I made plans or booked a flight I had to cancel because I was sick.

And so in the same ways we can get pigeon-holed by labels—“lawyer” or “student” or “parent” or “teacher” or any of the many, many roles we have—I too have felt pigeon-holed by “patient.” It was by necessity and not choice, but it still seemed to define so many of the choices and experiences I’ve had. My acute crises and in-patient admissions have calmed down, but often over the past several years it seemed I could hardly recognize the person who, despite some complications, could travel that much, could spend hours each day walking through the streets of Dublin.

(And certainly this past winterdidn’t help.)

Or, despite how na├»ve it may have been, I still trusted my body then, still depended on it not to let me down. For better or worse, I’m not as quick to say I do that these days.

And that’s where we get back to my recent trip. Yes, much of the trip was reminiscing and visiting old haunts (but so much better this time around because I was with my husband, and he could show me his old Dublin haunts, too) and most of what we did I’d done before. But it was new role for me, one I hadn’t been able to embrace in such a long time…and that’s why I appreciate that year so much now: being back in Dublin reminded me there is always the possibility of something new.

(Even if only for a few days.)
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