Category Archives: Sprue Interview

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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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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