Tag Archives: newly diagnosed

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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Why I Celebrate Celiac, and you should, too (plus: giveaway!)

In my last entry, I asked how I should celebrate my newly low antibodies. (The response was nearly unanimously in favor of alcohol—but I’ve kept my perch on the wagon for now, thanks very much.) This post is about celebrating something just a little different: celiac, itself.

When I got my first-ever celiac bloodwork results back in January and started sharing the news (one relative or friend at a time, shyly, haltingly—prior to my Internet-overshare era), the reactions were generally positive, along the lines of:

“I hope that’s it, so you’ll have an answer,”
or, “Awesome, you’ll finally feel better now!”
or, “Just wheat, rye, and barley? That doesn’t sound so bad.”

Then I’d start rambling about cross-contamination, and strict diet for life, and six months to two years to feel better, and I watched the faces slip and fall. The replies changed to:

“Maybe I don’t hope you have it after all,”
and, “Oh my god, I’m so sorry,”
and, “That’s terrible.”

Which is correct?

Well…obviously the best, most celebration-worthy thing would have been to never get sick in the first place (or—if you believe those insufferable “no sunshine without rain” folks—to get sick, be miraculously cured, and live the rest of my life with a renewed appreciation of my own good health). Being sick is not, you know, preferred.

But, as a second choice, a disease with a relatively foolproof cure—even an excruciatingly slow-motion, longterm cure—is way, way better than a disease or syndrome with no known cure. As long as I’m a good little gluten-free girl, my health is (knock on wood) far more likely to improve than worsen. That’s something to celebrate.

Of course, since I’m not feeling tiptop yet, it can be tough to get my celebratory feelings going. For inspiration, I can always visit the smart and often funny posts around the blogosphere on the “good side” of celiac (like this one, this one, and this one). If you’ll indulge me in jumping on the bandwagon, though, here are the top three tangible things I celebrate about celiac:

1) Community. I know everyone has said it already, but that’s because it’s true. The online celiac and gluten-free community is super supportive and full of passionate, intelligent, interesting voices. As a resident of New York City, land of “hate thy neighbor” and “not here to make friends,” I sometimes feel a bit community-spirit-starved. Sharing my thoughts and hearing all of yours is a real treat.

2) New adventures. This blog, the gluten-free grocery aisle, fascinating followup tests…all previously uncharted territory, all kinda neat. (Yes, even the tests. Spending a morning blowing into a balloon every twenty minutes to measure gut bacteria is something that everyone should experience at least once, preferably preceded by fasting.) If I hadn’t gotten celiac disease, there’s a strong possibility I would still have no idea that buckwheat groats are, like, the best grainlike substance ever. I would also probably not have a bag of xanthan gum in my pantry, as I do now (albeit, I must shamefacedly confess, an unopened one).

3) Savings. What? Gluten-free food is expensive? Okay, yes, some of it is. I too have had those six-dollar mini-muffins and air-filled bags of chips. But you know what else is expensive? Eating out in New York. And you know who doesn’t do that? Baby celiacs. This is why my student loan collectors also celebrate celiac.

Add all that to the prospect of—any day now, fingers crossed—my fully restored health and vigor, and you’ve got yourself something to, at the very least, tolerate and, on a good day, celebrate. But how (besides the obvious, you buncha lushes) to celebrate?

That’s easy. Come to the New York City Celebrate Celiac event! Hosted by Gluten Free Calendar, it’s happening on Saturday, July 13th, from 10 a.m. to 1 p.m., at the Affinia Manhattan Hotel in Astor Hall. I’ll be there to meet any of you who can make it, and I’ll be unveiling some fun new blog-related stuff while I’m at it. Here’s some extra info on the event at the NYC Celiac Meetup page. If you live in the area, mosey on down for performances, activities, vendors, collective effervescence, and, most importantly, my autograph.

Kidding! But I really would love to say hi face to face. That’s why I’m pleased to be giving away 10 tickets to the event. At $5 a pop (or $4, if you buy online here), they’re pretty affordable as is, but if you, like me, have been blowing through your I-don’t-eat-out-at-restaurants-anymore fund, every little bit helps. And, hey, that’s five more dollars you can spend on merch. Not that that’s what blogging’s all about.

To win a ticket, just comment on this post letting me know what you celebrate (or what you don’t celebrate, if you insist on being mopey) about celiac. Considering the scant probability of my having more than ten readers in the New York metro area, you probably won’t face stiff competition, but you’re still welcome to follow me and share the giveaway on Twitter to get extra entries and to celebrate our community here in the Big Gluten-Free Apple (don’t forget to include @spruestory so I’ll know).

For everyone outside of the area who’s read to the end of this post, I hope you’ll still join me, virtually, in celebrating celiac…if only because things could be a whole lot worse.

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Gluten nightmares (plus gratuitous cute baby photos!)

Do you dream in gluten?

If so, maybe you’re familiar with this nightmare: Someone presents you with a plate of cookies and tells you they’re gluten-free, then after you’ve eaten several…

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Original photo © tgilbers | Flickr

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Original photo © Lesley Show | Flickr

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Original photo © Kris Krüg | Flickr

My first-ever gluten nightmare was like that (but without the adorable baby photos). I think in the dream it was my mom who gave me the cookies—sorry, Mom, I know you’d never really do that!

Last night I had a new one: I dreamed I ate a box of Triscuits. When someone pointed out Triscuits aren’t gluten-free, my dream self was baffled. “I just…forgot!” she said.

Ha, ha, dream self. No forgetting allowed.

And, of course, there’s the ever-recurring waking nightmare of the newly diagnosed: It’s a year from now, and my doctor is showing me my chart and saying, “Turns out, you’re an asymptomatic celiac who just happens to have lots of other stuff wrong with you!”

Terrifying.

Luckily, even after a sleepless night, cute photos of children eating cookies always cheer me up.

Tell me your gluten nightmares! And if you’re dozing off at your desk this Monday morning, here’s wishing you sweet but gluten-free dreams.

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