Tag Archives: doctors

Hack your celiac! (This new app, CeliacCare, might help.)

You may have noticed there are a few things I hate about celiac disease. For example, how long it takes doctors to figure us out. The amount of time we spend lost in the logistical maze of insurance claims, referrals, and screwups. The premium we shell out to feel safe, and how long it can take to get better no matter how safe we’re trying to be. I could go on, and I bet you could, too.

Although there’s plenty of good stuff to say about having this particular disease, with its primarily dietary treatment, during what will no doubt go down in history as the golden age of gluten-free, there’s a lot that could be better. Some doctors’ standard of care for the newly diagnosed still consists of this:

. . . leaving patients unsure where to begin and what, if any, followup care they need. With luck, they stumble across good sources of information, but the less fortunate get mired in muck.

The word “hack” has come to mean finding a clever solution to a tricky problem—and living with celiac disease is definitely that. So, can we hack it? Is there, perhaps, an app for that? In fact, Clay Williams (who I met at the Columbia conference I attended) is about to launch one. It’s called CeliacCare, and Clay was kind enough to answer a few of my burning questions about it.

What is CeliacCare, and why should we be excited about it?

CeliacCare is an application that provides support for the full set of activities someone living with celiac disease needs to undertake to manage the disease and maintain good health. The app helps patients manage the day-to-day aspects of the disease, and ensures they are connected to and supported by their doctors and dietitians.

CeliacCare helps you manage celiac disease through four broad components, which are available on both the mobile app and in the patient portal.

appScreenLearn lets you stay abreast of new information about celiac disease and its treatment. This section includes curated material from a variety of celiac disease sources, as well as information that your doctor and dietitian can share with you directly. The information is richly tagged, so you can easily find the latest info on a given topic.

Eat helps you maintain a resource list of favorite things you like to eat, find new gluten-free recipes that are aligned with both your dietary preferences and other sensitivities, and find places to eat out. Our search engine even allows you to locate recipes based on your mood or your desire for a particular food. So, if you’re a bit stressed and you’re craving something crunchy, we can find something yummy for you! We also provide a food diary to help you plan meals and keep track of what you’ve been eating. You may not want to keep a diary all of the time, but making it easy to track things when you need to keep a closer eye on your diet is one of our key goals.

Monitor allows you to keep track of any symptoms you have. Experience has shown that patients who are asked, “How are you feeling?” often answer based on their experience over just the past few days. If you see a doctor or dietitian only once or twice a year, they may not get the whole picture. Tracking and sharing symptoms with a doctor or dietitian will give them a much clearer view of the symptom history of your disease. While the app makes it easy to report a symptom on your own, a particularly novel feature of the app is the ability for a doctor or dietitian to provide special monitoring assistance by running a protocol. When a protocol is run for you, you will automatically receive occasional in-app notifications containing questions or messages from your doctor/dietitian. These assist you in tracking important information that helps them to understand your day-to-day state better.

Care assists in planning visits to your doctor or dietitian. An important aspect of celiac disease management is ensuring you have an ongoing connection with those providing you care. Because your visits may be infrequent, it’s important that you cover everything necessary to maintain good health. Our application automatically provides you a completely personalized agenda for your visit—based on your current disease status, your symptoms, your food diary, and topics that you have added on your own.

CeliacCare is the first app to come out of your company Cohere Health Technologies. Why did you decide to start with celiac disease?

It was the alignment of two different factors. First, I have two friends who have celiac disease, so I’ve seen their challenges firsthand. Second, we had a partner in the recipe space who wanted to address conditions that had a dietary component, and celiac is a good starting point, because gluten is a known culprit. It seemed like the perfect starting point to build capabilities that will both help people with celiac disease and provide a basis to address other dietary issues and sensitivities.

Will CeliacCare also be useful for people with non-celiac gluten sensitivity?

Yes! Features like the sophisticated recipe search, the symptom logging, and the learning areas are broadly applicable. If people with gluten sensitivity are seeing a doctor or dietitian, the care planning feature is also quite helpful.

Some hospitals have systems that allow online communication between patients and doctors (for example, I use Weill Cornell Connect). Do you see CeliacCare as a complement to these systems or a replacement for them?

We are complementary to these systems, and we have designed our platform to make it easy to share information with and receive information from other electronic health technologies. Ultimately, the win for patients is for us to provide novel capabilities that integrate in positive ways with other tools in the healthcare ecosystem.

“Fragmentation” of medical care is annoying. I go to one doctor who says, “You should talk to X doctor about this,” but that doctor says, “It’s more a question for your Y doctor,” who in turn directs me to Dr. Z. Is this app going to help fix that?

This is indeed an annoying issue, and unfortunately isn’t an easy one to solve in a single step. However, Cohere Health is hoping to help with this and other issues of care coordination. The starting point is to get you and all your health-care providers on the same page. Our disease-specific applications are a significant step in this direction. An even more challenging issue is to get doctors who are treating different conditions to coordinate care. A rising percentage of the population is contending with more than one chronic condition. At Cohere Health, we are working to provide an integrated experience when people are using multiple of our applications that are addressing care for different conditions. Through this integration, we will provide a seamless set of capabilities that are personalized to an individual’s specific health challenges.

According to your Cohere site, you plan to “glean useful insights for chronic disease treatment from a variety of health data sources, including [your] apps.” Should people who use CeliacCare have any privacy concerns?

No. Our goal is to build the most patient-friendly application possible, and this means two things. First, CeliacCare is fully HIPAA compliant, meaning your data is encrypted during both transmission and storage, and cannot be shared without your permission. Second, your data belongs to you, meaning that only you decide whether you want it available to medical professionals who might gain insights from it, whether you want to opt out of sharing at any point, or if you want to fully remove it from our system at any time.

When can we get the app? On what devices?

We plan to launch mid-summer on both iOS (Apple) and Android devices. The app will be available in the Apple App Store and on Google Play. You can sign up at www.CeliacCare.com to be notified when it comes out.

Very important: what are your personal favorite gluten-free foods?

I grew up on a farm, and we always had a garden in the summer, so I am a huge fruit and vegetable hound. I like almost every kind of fruit or vegetable, but summertime brings up thoughts of watermelon. When I was about eight years old, my dad was one of the largest growers of watermelon in the nation, and I’ve always thought they tasted like summer. A favorite recipe involving watermelon, cheese, and fresh herbs is available here.

Readers, Clay has some questions for you, too—he’s inviting patients and docs to give feedback to help make the app the best it can be. Check out the website to share your thoughts, and feel free to share a few of them here, too. Do you use any health-related apps already? What clever means have you devised to hack your celiac?

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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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When is your health like a plugin? – On diagnosis, technical difficulties, and Band-Aids

Is there anything more annoying than technical difficulties? Technology is meant to quietly smooth the course of our daily existence; it’s a fact of life that we take for granted—even ignore entirely—until it starts to go wrong.

Well, maybe one thing: health problems. A healthy body is similar to working technology: it’s a neutral backdrop to our activities, a nonintrusive vessel for our thoughts and cares and aspirations. No one rejoices in their eyesight till they start to lose it. No one revels in their ability to sleep until insomnia strikes. No one praises their guts for breaking down food until the guts themselves break down. I certainly never realized how healthy I was until, one day, I wasn’t.

Once difficulties begin—with our technology or our health—we realize how essential its function was to our former happiness. And so begins the search for solutions. Step one? Diagnosis.

laptop keyboard and stethoscope

What seems to be the problem?
Photo © jfcherry | Flickr

The first definition of diagnosis, according to good ole Merriam & Webster, is “the art or act of identifying a disease from its signs and symptoms” (and for a good read on the “art” of diagnosis, I highly recommend Every Patient Tells a Story, by Lisa Sanders). But the third definition, “investigation or analysis of the cause or nature of a condition, situation, or problem,” is applicable to technology. That’s why you’ll hear IT people toss around the terrifying phrase “running diagnostics.”

Over the Christmas break, I moved my little baby gluten blog from WordPress.com to a self-hosted site, with some pro bono help from my computer-programming big brother. Although I like the freedom that gives me to, oh, throw affiliate links at you (not that I have, yet), there’ve been growing pains: I’ve had to diagnose and fix several technical issues since the transition.

With a self-hosted blog, you’re the one responsible when problems strike. You’re the patient and the primary care physician. Unfortunately, in my case, you’re a rather bumbling one who looks everything up on Google. The most you can hope for is to pinpoint the general source of the problem and refer yourself to the right specialists.

My latest “symptom,” as some of you are aware, arose this week. Several of my old posts—from June, September, and October 2013—were resent to my subscribers. Everyone who said anything about it was very nice—thank you!—but I felt bad about the spam.

Putting on my doctor hat (is that a thing?), I determined the problem was with Jetpack, the plugin that brought all my old subscribers to my new site without their having to resubscribe, which has been overall handy. A “Happiness Engineer” from their support team let me know they were looking into the problem. In the meantime, I could stop the emails by deactivating the plugin.

band-aid on finger, laptop trackpad

I’m also familiar with real Band-aids on my real fingers. I should not be allowed near sharp kitchen implements.
Photo © Tony Kwintera | Flickr

This type of solution—“We don’t know what’s wrong, but here’s a Band-Aid to get you by”—is depressingly familiar to me from my years with a diagnosis of IBS and, unfortunately, continues to be familiar. “Issues that haven’t gone away after nearly a year gluten-free could be connected with celiac disease; they don’t seem to be connected with anything else; and it might help if I try . . .,” etc.

I obediently applied my blog Band-Aid and emailed subscribers that the problem was fixed. Almost immediately, of course, the “deactivated” plugin emailed out yet another post (the robots really are coming for us). That’s familiar, too. Band-Aid remedies don’t work when there’s a deeper, undiagnosed problem.

Eventually, I received another email from Jetpack: “We’ve now fixed the issue. . . . Sorry again for the inconvenience.” Why it’s fixed, or what went wrong in the first place, I can’t say. My blog doctor clearly subscribes to Sigmund Freud’s belief that “The doctor should be opaque to his patients and, like a mirror, should show them nothing but what is shown to him.”

(Note: the word diagnosis derives from diagnoskein, meaning “to know thoroughly.” Generally it’s not just the doctor who gets to know. But Freud’s been wrong before.)

Lego doctor with laptop

The blog doctor will see you now (but you won’t see him).
Photo © Jay Reed | Flickr

Opacity aside, a diagnosis was apparently made, because the fix is in. Subscribers should—fingers crossed—be able to expect no more unwanted emails from my blog (which is why you should subscribe now, if you haven’t yet!).

Granted, if we sustain the health analogy, this is a bit like saying, “The doctors say I won’t keep projectile vomiting at random times without any warning, so you should be able to sit with me at lunch,” but once we’re discussing vomit I’d say it’s time to drop the metaphor, wouldn’t you?

Tell me—which do you find more frustrating: diagnosing health problems, or diagnosing technical problems? Do you find people take their good health for granted? And what’s all this about doctors being mirrors?

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The ABCeliac of It: Why Children’s Books Matter, and Are Secretly All About Celiac Disease

Since the moment I heard it existed, I’ve meant to visit the New York Public Library’s exhibit “The ABC of It: Why Children’s Books Matter.” Finally, on Sunday, Sprue Jr. and I found ourselves nearby while seeing our friend Jimena off on the bus back to DC, so in we went.

photo (31)On our way, we stopped in to the Winter Village at Bryant Park to look at knickknacks and watch the first of the season’s skaters wobble ’round the rink. We couldn’t resist stopping at a stand prominently displaying the phrases “gluten free” and “we bake it fresh daily”—music to our freezing-over celiac ears—and selling pão de queijo, a Brazilian cheese and yucca bread. (Another one of those “even better than the rolls you went in search of” naturally gluten-free foods.)

We tasted eight different delicious buns (they’re small!), among which my favorites were the pesto & goat cheese, chocolate chip, and pizza. If you’re nearby, I recommend you check it out, although I goofed on asking my normal questions about cross-contamination (taking it on faith, since the pão was the only thing being sold), so I suggest you do better due diligence than I did. For what it’s worth, I felt fine.

Now, to the exhibit. The library is beautiful; if you’ll be in New York around the holidays, you could get a wonderful afternoon out of the Winter Village plus the library, which is free to the public and as good as any museum (less crowded, too). We passed through another exhibit on games and plan to return soon for one on AIDS activism. There are murals and old books everywhere, and I didn’t spot a single typo in the descriptive placards (unlike at some otherwise awesome museums…cough MSI Chicago cough).

Because it was Sunday, the library closed at 5, when we were only halfway through the exhibit because we’d both been distracted by sitting down with some of our favorite books. I was struck, as usual, by all the hidden gluten-free plot lines waiting to be unearthed.

Take Madeline, for example.

Cheerful little Madeline is the smallest, bravest, and all-around coolest kid among all the girls who reside in that old house in Paris that was covered with vines. But one night, after a long day of adventures trotting about the city in two straight lines…

madelineLook at that cause and effect! First Madeline eats bread, then she wakes up, crying, in terrible pain. Of course, the devoted Miss Clavel rushes her to the hospital, where a well-meaning doctor promptly removes little Madeline’s little appendix. Afterwards, Madeline seems good as new, but I can’t help but wonder if they got it right. (You know doctors.)

photo (33)

Celiac disease is, after all, often mistaken for appendicitis (with this study showing that appendix-removal surgeries are superhigh in undiagnosed celiac patients compared to healthy controls—the very low “P” value, my scientist sister explained, indicates the result is significant). Madeline’s small stature is also suspect. And I looked closely at her hospital food and didn’t notice a bit of bread on her tray. Maybe that’s why she perked up.

Of course, whether Madeline felt better because she lost her appendix or because she went gluten-free, the story would end the same: all the other girls want to be her. That little trendsetter.

Then there’s In the Night Kitchen.

This book, by Maurice Sendak, explores the adventure of one little boy through a wild dreamscape in which gigantic chefs try to use him as milk in their “morning cake.” The illustrations are surreal and somewhat disturbing, verging on nightmarish—made even more so by my new perspective on the idea of being plopped into a huge bowl of batter. That’s one glutening I’m not sure I’d want to wake up from.

Click for a closer look at poor little Mickey sinking into the cake, but kindly ignore my “I’m still freezing even though I’m indoors” attire. New York got cold.

Click for a closer look at poor little Mickey sinking into the cake, but kindly ignore my “I’m still freezing even though I’m indoors” attire. New York got cold.

Bakers, please note: I’m not the milk, and the milk’s not me—I’m Molly. So take your enormous bags of flour and stay out of my dreams.

I also sat in a Phantom Tollbooth–style car, watched Alice grow till her head hit the ceiling, and paged through CorduroyThe Stinky Cheese Man, and other tales that still matter to me as much as they ever have. I won’t turn all of them into celiac stories, but I’ll leave you with one more:

That’s Harold and the Purple Crayon, of course.

photo (34)

With his crayon, Harold shows us what we should be doing every single day: creating around ourselves the world we’d like to see.

Do you, for example, want to see a more gluten-free world? What about a peaceful world, a happy world, a just world? Regardless, take a page out of Harold’s book, and get out there and make it. If just one children’s book inspires just one child or adult to change just one part of their world, I’d say that children’s books matter indeed.

What’s your favorite children’s book? Did you have any fun gluten-free adventures this past weekend? And when’s the last time you pulled out a crayon and started drawing?

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