Tag Archives: technology

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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How often do you “contact the manufacturer directly,” REALLY?

“For the most complete and accurate information, contact the manufacturer directly.” Some version of this advice appears in every introduction to gluten- or allergy-free living worth reading—and for good reason. Getting the answer straight from the source allows you to dodge cross-contamination bullets and sample new products with confidence. It’s great!

So why does it feel so much like homework? Much like SAT vocab drills, it’s a chore that can only help me, yet still seems unbearable. I use every excuse to avoid it:

  • I’m busy.
  • I’ll just buy some other product I know is fine.
  • Customer service isn’t available because it’s a weekend/evening/holiday/they prolly just won’t pick up, man.
  • If I take it home, call, and find out I can’t eat it, I won’t want to return it. In fact, I know I wouldn’t return it. That’s wasteful!
  • All that information is online anyway.
  • Is this really my life?!

I’m curious: Am I the only one who feels this way?

Personally, if a label isn’t telling me what I need to know, I always turn to Google first. (It’s like the Seamless ad says: “The best part about having a smartphone is never having to call anyone.”) For most products, you can find bloggers who have written about their experience contacting the manufacturer, or lists on About.com, or debates on forums. Sometimes the manufacturer’s website even pops up with a handy FAQ (though said website is invariably mobile-unfriendly to the extreme). A lot of times, that’s probably enough. But not always.

You might think no one would find it in his/her company’s best interests to stop producing a line of gluten-free products or start processing a previously allergen-free food on contaminated lines, but you’d be wrong. Manufacturers change stuff all the time, for reasons both clear and abstruse (though almost all, I’d wager, connected to money). Case in point: our go-to gluten-free dried beans provider, Shiloh Farms, recently discontinued its entire line of GF legumes due to supplier costs.* (They still sell a few other certified items.)

It goes the other way, too, of course. Brands cited as no-gos in ancient Celiac.com threads have cleaned up their act, and both small and mainstream companies introduce new goods every day. Even the mighty About.com Guide Jane Anderson can’t keep pace with every recipe reformulation and label change. (She does, of course, advise us to “always, if in doubt about the gluten-free status of a product, contact the manufacturer’s customer service personnel directly.”)

We may be only 11 years away from falling in love with our computers’ operating systems (according to Spike Jonze) and 4 to 10 years away from a cure for celiac disease (according to Stefano Guandalini), but even so, the best source for accurate, up-to-date information isn’t necessarily the Internet.

girl on iPhone black and white

Unlike bittersweet photography subjects, we don’t have to confine all our interactions to typing and swiping. Hey, food issues are isolating enough as it is!
Photo © Shinichi Higashi | Flickr

You don’t always need to contact the manufacturer. You can look for reassuring label claims, trustworthy companies, and reliable certification organizations (though we all have slightly different ideas of what those are). We’re also getting ever closer to the time when manufacturers officially can’t put “gluten-free” on a label without it being, you know, true.

Of course, even if you trust a brand, you should check labels for anything new and troubling. You don’t, however, have to call every time (unless you’re in dire need of a hobby).

On the other hand, when:

  • something—like popcornshould be gluten-free, but doesn’t say it is
  • a label includes that sneaky GF-in-a-circle near-copy of the “certified” logo
  • you’re holding two cans of honey-roasted mixed nuts made by the same company and only one says it “may contain wheat”
  • you want to know why, in the name of god, Shiloh Farms would be so cruel as to take away your one source of dried chickpeas, out of which falafel absolutely must be made
  • you’ve read EVERYWHERE that egg- and bunny-shaped chocolates are usually wheat-contaminated, but you’ve found the one bag in the store that doesn’t say it is, and you need to be sure

. . . well. That’s when you call the manufacturer. Or email, if it’s available and you don’t mind waiting a day for a response. I prefer email, because I hate waiting on hold, like getting a response in writing, and am antisocial; but I do force myself to call sometimes, too.

And, you know what? In the end, it is a chore, but it’s a satisfying chore. Sometimes, sadly, you learn you can’t eat that thing (in which case—woohoo!—you didn’t waste your money on poison!). But other times, you learn you can. 

You learn, for example, that Soyboy’s online FAQ is out of date, and their products marked “GF” are not processed on lines with wheat. You learn you can open that tempeh, turn it into a Cajun stir-fry way too spicy for your sister to enjoy (sorry), and chow down. And that’s when it all—hold music included—becomes worth it.

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When do you pick up the phone to call a manufacturer? Or do you prefer email? (Don’t be afraid to show me up, if you’re actually a responsible adult who makes phone calls and stuff.) Have you ever had a really negative, or especially positive experience with this?

*How do I know the legumes were canceled due to supplier costs? Because I contacted the manufacturer directly! Duh! And I’m glad I did. Although I was disappointed not to learn it was all some big mistake, I was pleased to hear they’re seeking new suppliers of gluten-free garbanzos. Falafel and I are not, I hope, through for good.

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