Tag Archives: celiac disease

Don’t waste my time! (On “patient autonomy” and health insurance)

If there’s one thing that makes my blood boil, it’s having my time wasted. I only have so much, and I waste enough of it myself that I really can’t afford to lose any to others’ incompetence.

Unfortunately, one of many frustrations that come with a chronic illness is wasted time. Managing celiac disease takes a fairly large toll on your time in the form of food research and preparation—though that’s, arguably, time valuably spent rather than wasted. Far more annoying, really, is dealing with doctors.

I, for example, have an HMO (health maintenance organization) insurance plan. The main difference between that and a PPO (preferred provider organization) plan is having to be referred by a primary care physician (PCP) in order to see a specialist. Even a specialist specializing in the chronic condition I will have for the rest of my life.

Researchers have actually felt the need—and gotten funding—to study the benefits of long-term follow-up care for celiac disease patients. Turns out (surprise!) it’s good for us. (See, e.g., this article in the Canada Journal of Gastroenterology.)

Judging from that, for the rest of my life, or at least the next few years, I should see a celiac disease specialist now and again. So can’t I just have a standing referral?

No.

Instead, before I can see my gastroenterologist to try to find out why I still feel crappy after over a year of being as carefully gluten-free as can be, I have to:

  1. call my PCP’s office
  2. wait on hold
  3. talk with a receptionist who seems determined not to understand what I’m asking for or help me to get it
  4. wait nearly a week for a return phone call
  5. follow up myself
  6. learn they need me to supply the doctor’s ID number (whether they were planning to ever, oh, call me for that information, or why they couldn’t ask me for it the first time I called, I do not know)
  7. tell them the ID number
  8. be advised to see my primary care doctor about whether I need to see the specialist
  9. snap that I have a chronic condition that my doctor already knows about
  10. feel bad for losing my temper
  11. agree to wait several days more for them to put through the referral
  12. and then and only then, finally, make the appointment with the specialist I already saw a year ago, who we all know I need to see.

I understand Oxford wants me to get referrals rather than run around willy-nilly to specialists and expect insurance to pay for it. They don’t trust me to know who to see, and why should they? Most people are idiots, and I haven’t proven to them that I’m not.

But wouldn’t it be nice if I could?

Look, I’ve been SAT tutoring for a while now, and if there’s one thing SAT tutoring will do, it’s turn everyone involved off of standardized tests. But some tests are necessary proving grounds or barriers to entry. No one wants people behind the wheel who haven’t passed a driving test, right?

So what if there were a test for basic medical common sense? Since “the prevailing ethical mantra in medicine” is supposedly patient autonomy (scoff), we could call it the PAT (Patient Autonomy Test). Those who passed could be trusted to refer themselves to specialists.

Insurance companies should be on board with this—after all, if I wind up needing to see a specialist, they lose money by making me see another doctor first to get the go-ahead. With the PAT, we all save money (and time).

Questions might include:

What kind of doctor should you see if you have a lifelong disease primarily affecting your gastrointestinal tract?

a) a gastroenterologist
b) a podiatrist
c) a cardiologist
d) none of the above

In your opinion, specialists and specialized medical tests and procedures are:

a) fun toys to enjoy at a whim
b) resources to turn to under specific, necessary circumstances
c) both

Are you:

a) a child
b) an adult capable of rational thought
c) a complete idiot
d) really struggling with these test questions

A quick reading comprehension portion on a passage describing recommended follow-up care for a specific condition could come next. And then a section on triangles, because—as my SAT students could tell you—that’s stuff we all really need to know.

bubbling an answer on standardized test with pencil

Don’t make any stray marks, now.
Photo © biologycorner | Flickr

What time wasters get your blood pressure up? And do you daydream about patient autonomy, too?

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Gluten-Free Astrology: Pisces (born February 19 – March 20)

I can hardly believe it, but we’ve made it through an entire year of gluten-free astrology! We started with bold, optimistic, energetic GF Aries, and we end, of course, with depressive, lazy, self-immolating GF Pisces. Aw, just kidding, you’re only those things some of the time.

pisces fish

A cheery lot, you GF Pisces are.
Photo © Rromir Imami | Flickr

On the more positive side, if you’re a GF Pisces, you’re well known for your intuition: gluten-free pals turn to you for advice on whether to try that new restaurant that says it’s gluten-free-friendly, and a certain rumbling in your tummy can always tell you if they’re in for a glutening. Woe betide those who ignore your hunches, because there’s a decent chance they’re actually supernatural (if you believe in that sort of thing—which, being a Pisces, you probably do).

On the other hand, those friends who do wind up sick after an outing can count on you to be by their bedside, nursing them back to health with nothing but sympathy for their plight. You’re deeply compassionate and empathetic, not at all an “I told you so” type.

Most unfortunately, despite their keen powers of perception and willingness to care for others, GF Pisces often lack the self care skills necessary to keep themselves out of gluten’s way. You hate to say no and therefore often head out to eat at places you know aren’t safe for you. Your loyal and generous spirit might even lead you back again, tempted by managers’ assurance that they’ll make things right this time. Sometimes, they really do. Other times . . . well, I think you can fill in that ending yourself.

To compound the problem, you have a distinct tendency to overindulge in the good (and bad) stuff, which might mean you wake up not only glutened, but hungover to boot. Bummer.

A dreamer but not a schemer, the GF Pisces is unlikely to be an enterprising businessperson in the gluten-free zone. You could, however, probably write a lyrical chapbook or compelling novel about your celiac experience, if you could ever get up the energy to do it. Maybe this month is the right time; I don’t doubt we have a snow day or two left in store when you might find the time to pick up the pen. Of course, in your day-to-day life, you also do your part as a one-man support system for your gluten-free friends in need.

gluten-free Goldfish Puffs

A handful of your GF Piscean brethren?
Photo © theimpulsivebuy | Flickr

Your ruling planet, Neptune, is god of the sea, and your sign—mirror-image fishes tied together (makes it hard to swim)—and special colors (sea green and turquoise) link you even more to the water. So if you’d ever like to pamper yourself in a relatively healthy way for once, consider booking a spot on a gluten-free-friendly cruise. There’s a surprising number of them available, if the Internet can be believed. (If you book a ticket, take me with you!)

Extremely emotional and changeable, there’s a fair chance you suffer from mood swings or even full-on bipolar disorder as a result of your celiac disease. At the very least, you’ve been known to shed a tear outside of a pizzeria or cake shop . . . or even just at the thought of your old favorite. That’s when your active imagination isn’t much fun.

Speaking of the old imagination, many of your fellow Pisceans are artists and dreamers. Here are a few to be aware of:

Gabriel Garcia Marquez

Gabriel Garcia Márquez

Gabriel Garcia Márquez, born March 6, 1927, is not, to my knowledge, gluten-free, but he does hail from Cartagena, Colombia originally. Any bread he ate there would likely have been made from masa arepa (corn flour), cassava (tapioca root), and sago. However, he’s definitely sympathetic to our plight, not only because he’s a Pisces but also because he is, self-reportedly, “on an eternal diet.” He told the NYT in 1988, “Half my life I couldn’t eat what I wanted because I couldn’t afford to, the other half because I have to diet.” Most GF people can’t even afford to eat the food we can eat on our diet, so Pisces or not, we can relate.

Johnny Cash (eating cake)

Johnny Cash (in a bush, eating a cake)

Johnny Cash, born February 26, 1932, was certainly a Pisces: musical, somber, dark, and drugged out, drunk, and philandering. Sounds about right! But he was most certainly not gluten-free, because—from what I hear—no one, no matter how high, would want to eat an entire gluten-free strawberry cake made in the 70s by themselves.

As always, the “information,” such as it is, in this post has been largely ripped off from The Only Astrology Book You’ll Ever Need, by Joanna Martine Woolfolk, which is in fact the only astrology book you’ll ever need (need here being a relative term).

See also: Aries, Taurus, Gemini, Cancer, Leo, Virgo, Libra, Scorpio, Sagittarius, Capricorn, Aquarius

Well, folks, that’s everyone! I’m not sure whether I’ll be continuing this series in another form after this—maybe you want me to start in on romantic pairings (ooh la la)—but I hope you’ve enjoyed the tour through the cosmos as much as I have.

From now on, if you have further questions about the stars, you’d better direct them to your local GF Pisces. If that’s you, you can volunteer your services in the comments.

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Forget gluten-free Girl Scout cookies. Gluten-free summer camp is where it’s at.

It’s Girl Scout cookie season, and everyone I follow on Twitter is buzzing about the newest addition: the chocolate chip shortbread cookie. Why all the excitement over such an uncharacteristically boringly named cookie? Well, usually at this time, we GF folks only get to salivate and whine (I did both last year). This year, we get a cookie of our own. That’s right, it’s gluten-free!

Now, you wouldn’t know it from everyone I follow on Twitter, but Girl Scouts do activities all year, not just sell cookies. I can’t recall ever doing anything particularly impressive in pursuit of a badge as a Brownie, but many Girl Scouts do pretty cool stuff, from creating science clubs for girls to building houses for bats.

Courtesy of Sabrina DeVos, Girl Scout

Photo courtesy of Sabrina DeVos

Another very cool thing that one Girl Scout—sixteen-year-old Sabrina DeVos—is doing is putting together a new gluten-free summer camp in Ithaca, New York.

Celiac Strong Camp is Sabrina’s Girl Scouts Gold Award project and will be held annually, starting this year from August 1st through 3rd, 2014. Celiac Strong Camp is currently open to registration for both campers (boys and girls, age 8 to 15) and volunteers.

I learned about the camp through Carrie Balthasar of Basic Batters, and when I reached out to Sabrina, she kindly agreed to do an interview.

Read on to learn more about this brand-new camp, dream of summer, and feel jealous that you didn’t do anything close to this cool as an eleventh grader.

I never went to summer camp. What’s so great about it?

Summer camp is where you can be free, make friends, and have sleepovers every night. I absolutely love summer camp and recommend it to anyone. 

Why do gluten-free kids need a camp of their own?

When I go to summer camps that don’t have gluten free food for everyone it is kind of awkward. I feel like people think I’m getting special treatment because I’m eating something different. And at our camp, there will be no risk of cross contamination, many opportunities to try new food, and everyone will be eating the same thing. It won’t make kids feel different and will let them be worry free.

Tell me about your own summer camp experience. (Do you go to a specifically gluten-free camp, and if so, which one?)

I go to Camp Celiac all the way in RI, an eight-hour drive, and have been going since I was eight years old. I have made lifelong friendships and always look forward to the food, and having something in common with everyone that goes there (celiac). These people understand me and what I’ve gone through.

Can you briefly explain what a Girl Scouts “Gold Award” is, for those of us who didn’t make it past Brownies? 

There are levels of awards that girl scouts strive to achieve. First is the Bronze award, then Silver, and then Gold. This is the final step in girl scouts, and it is an honor to achieve it, and will always be. There are many steps to do it. You have to have an interview over the phone with council so they can approve it before you begin, and in order for it to be approved it has to be something unique that helps your community. It also has to be recurring; therefore Celiac Strong will be annual! And then they have to approve it again at the end to make sure everything went the way it was supposed to.

You’ve been gluten-free for almost as long as you’ve been a Girl Scout. Which is the more important part of your identity?

They’re both very big parts of my life, but I think celiac is more important, not that Girl Scouts isn’t important to me, it very much is. I just think it’s kind of my duty to tell everyone what celiac is and inform everyone as much as I can about it because not a lot of people know about it, at least they didn’t use to. A lot more people are educated now. But I always talk about it at school and have no problem answering people’s questions.

What sort of activities can kids expect to do at camp? Will there be gluten-free S’Mores?

It wouldn’t be camp without S’Mores. I’m planning on having a cooking demonstration happen at the camp, there will be swimming, camp fires, fishing, maybe archery, and I’m still planning out the rest. But expect fun times!

Boy Scouts toasting marshmallows

Wrong kind of Scouts, but aren’t they adorable?
Photo © vastateparkstaff | Flickr

What kind of food will the camp serve, and who will make it? Will you be able to accommodate vegetarian/vegan kids? (That’s a subject close to my own heart!)

Well, first and foremost, the food will be gluten free. We also are going to accommodate lactose intolerance. We’re still working on the menu. The menu will be approved by a nutritionist. My mom and her “team” are going to be making the food, and ask anyone who knows my mom, she is a great gluten free cook. Sadly this year we won’t be accommodating vegetarian/vegan kids.

Will you be accepting campers who don’t usually eat gluten-free?

I’m accepting kids who have the diet first. The camp is for them, if we have a lot of open spots and people registered who aren’t gluten free, then yes, but they will be eating gluten free with the rest of us.☺

You’re currently accepting volunteers. What will they be responsible for, and how many are you hiring? Can you describe your ideal volunteer?

I need volunteers for different things. I mostly need some to be counselors to watch the kids. I also need a volunteer to be a certified lifeguard, and a certified nurse (I already have one, but two would be fine too). The volunteers won’t need to pay to go to the camp, will need to have a background check, go through training, and will not be paid. I only need about 10 for counselors.

How can people or companies interested in acting as sponsors get in touch with you? 

They can email me at sabrina40154@yahoo.com. There is a spot on my website too for sponsors if they wish to contact me there. I’m looking for food donations and demonstrations/program activities.

Cayuga Lake, canoe

A probably-more-tranquil-than-any-camp-would-ever-be view of Cayuga Lake (which the camp is near). Boy, wouldn’t summer be nice right about now?
Photo © Katrina Koger | Flickr

Have you run into any tricky logistics so far in organizing the camp? What’s your advice to other young women (and men) interested in organizing something like this in their community?

It’s difficult to get the word out, we don’t have many kids registered right now and I really need to figure out a way for people to find out about the camp. Also, getting food donations is a bit tricky, but I’m sure it will be OK as it gets closer to August. My advice is to not put off reaching out to people and organizing things, you have no time to procrastinate.

Are you excited about the new gluten-free Girl Scout cookie? (Had to ask.) What’s your favorite kind of gluten-free cookie?

I’m very excited about the new cookie. Since we don’t have them where I live yet, I am having my friend from camp who is a Girl Scout mail me some. She says they are very good. My favorite cookie, that is a verrryyy hard question. I’d have to say Lucy’s chocolate chip cookies. They are really good.

Favorite campfire song?

I know so many campfire songs, it’s a little ridiculous. My favorite is probably the Pizza Man song.

What’s next for you?

I plan to graduate high school next year then off to college for music.


So, how cool is that? Kudos to Sabrina for organizing what I’m sure will be a great success. If I had kids, I’d definitely sign them up.

In the meantime, I’m seriously considering volunteering. After all, I missed out on camp as a kid. I’d never even heard of the Pizza Man song! (I just looked it up on YouTube and I’m glad I did. Hope it’s about gluten-free pizza, though.)

Tell me about your camp experiences, favorite camp songs and activities, and S’Mores-inspired GF recipes in the comments. If you have questions for Sabrina about Celiac Strong Camp, go ahead and contact her at her website—and spread the word to anyone you think might want to join. By the way, I didn’t mean it about forgetting the cookies—I know I can’t.

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Gluten-Free Astrology: Capricorn (born December 22 – January 19) AND Aquarius (born January 20 – February 18)

Since I missed posting my usual personality analysis, predictions, and advice for gluten-free eaters born under the sign of Capricorn back in December, I’m mixing it up this time with a special double edition of Gluten-Free Astrology.

I’ll cover all the need-to-know facts about Capricorn and Aquarius, then we’ll play a little game with celebrities. Got a goat or a water-bearer in your life, or are you one yourself? Then read on!

The GF Capricorn

Capricorn’s symbol is the goat, and there’s a good reason for that. GF Capricorns are surefooted, able to pick their way over obstacles to reach whatever peak they’ve set their sights on. Like Virgos, Capricorns are organized creatures who set goals, make plans, and proceed steadily toward them.

goat silhouette standing on mountain

Calmly looking back at the path you’ve trod.
Photo © BR0WSER | Flickr

But Capricorns’ ambitions are often higher than Virgos’, and always less negotiable. While a GF Virgo might set up a safe, tidy, 95% gluten-free kitchen and allow his/her family to keep eating Triscuits, the GF Capricorn—uncomfortable with ambiguity—won’t rest until every last crumb has left the building.

You’re diligentpractical, and as stubborn as a Taurus, which combine with your rigid sense of organization and clarity of thought to make you, as I’ve said before, basically the best sign ever at being gluten-free.

Self-sufficient, you may volunteer to handle the food at professional and social events, but after painstaking preparations you have trouble letting go and enjoying the secure gluten-free party you’ve planned. Others may see you as distant or even controlling, especially when you’re slapping their hands away from your tortilla chips. Naturally a loner type, Capricorns risk becoming even more isolated once diagnosed with a gluten-related disorder—too bad, because inside, you honestly long to be loved. Spend this month working toward your goals, for sure, but don’t be afraid to make companionship a priority, too.

Black and white goat behind fence

Don’t get trapped by your gluten-free diet and health goals.
Photo © Rachel Groves | Flickr

The GF Aquarius

Like our friends, the GF Capricorns, you can be obstinate when you’re sure you’re right (and, since Aquarius is the Ravenclaw of the astrology world, you’re right annoyingly often). Also like Capricorns, Aquarius can come off as distant—in your case, because you really do prize independence over all else. For the most part, the similarity ends there.

Uranus

Your ruling planet, Uranus, represents the unconventional and unexpected—and it’s really pretty too, right?
Photo © wstera2 | Flickr

Where Capricorn is steady, Aquarius is zany, constantly changing directions and cooking up wild schemes. You’ve probably had so many gluten-free business ideas, you’ve lost count. Maybe you’ve even tried to make some a reality: tossing ideas around and getting to know potential clients is lots of fun. Tying yourself down longterm? Not so much.

The GF Aquarius is outgoing, a traveler, and willing to experience just about anything other than boredom. You love learning and sharing ideas and information: your sign, the water bearer, represents that passion. If anyone can manage to enjoy going gluten-free, it’s you: learning all that new lingo and science, mastering the baking learning curve, and enlightening everyone you know about what exactly is a “villus”? A fascinating challenge!

You trade tips with every gluten-free person you meet, put your rapier wit to work when someone criticizes our lifestyle, and try all the new restaurants. (You might get glutened more often than average, but for you, that’s part of the journey. Yeah, you’re a little odd.)  There’s a decent chance you’re a gluten-free blogger—and, if so, you’re very good at it, besides a slight tendency to overestimate your own expertise.

A little more trivia

When it comes to health, GF Capricorns suffer from stiff joints, rheumatism, and orthopedic problems. GF Aquarius struggles with arterial troubles, as well as shin and ankle sprains and breaks. I probably don’t need to tell you these are all symptoms of gluten-related disorders.

Now, time for a pop (culture) quiz. Here are a few well-known faces, some Capricorn, some Aquarius, some gluten-free, some not. Take a stab at guessing who’s who, then scroll down for the answers.

Martin Luther King, Jr.

Martin Luther King, Jr.

Lewis Carroll

Lewis Carroll

James Joyce

James Joyce

Oprah Winfrey

Oprah Winfrey

Drew Brees

Drew Brees

Ellen DeGeneres

Ellen DeGeneres

How’d you do?

  • Martin Luther King, Jr.: Capricorn (Jan. 15), not GF (he preferred southern food such as fried chicken and pecan pie—decidedly glutenous, but I’m sure you could find GF versions to make in his honor today)
  • Lewis Carroll (originally “Charles Lutwidge Dodgson”): Aquarius (Jan. 27), not GF (according to one biographer, he subsisted primarily on fruit, dry biscuits, and—in his younger, “greedier” days—cakes)
  • James Joyce: Aquarius (Feb. 2), not GF (suffered from mysterious stomach pains, often attributed retrospectively to syphilis, but who’s to say it wasn’t really that other “great imitator,” celiac disease?)
  • Oprah: Aquarius (Jan. 29), briefly GF (in 2008 she tried a 21-day “cleanse”; despite enjoying gluten-free waffles throughout, by the end she was “sure . . . happy to return to gluten”)
  • Drew Brees: Capricorn (Jan. 15), GF (and dairy- and nut-allergic too; if press releases can be believed, he loves So Delicious)
  • Ellen DeGeneres: Aquarius (Jan. 26), not GF (and rather annoyingly put down Gluten-Free Singles on her show in November)

Hope no one minded the double feature! (I’d never get away with it for Leo.) Next month is Pisces, the last in the rotation—hope you’re looking forward to it as much as I am.

Capricorns and Aquariuses (Aquarii?), duke it out in the comments, and if you liked the post, please share.

As always, the “information,” such as it is, in this post has been largely ripped off from The Only Astrology Book You’ll Ever Need, by Joanna Martine Woolfolk, which is in fact the only astrology book you’ll ever need (need here being a relative term). Celeb photos from Wikimedia Commons.

See also: AriesTaurusGeminiCancerLeoVirgoLibra, Scorpio, Sagittarius

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