Patients and Social Media

In many ways, SMUG has been my personal laboratory for learning about social media and how I can apply these tools to my work at Mayo Clinic. I’ve been able to experiment with blogs, Facebook, Twitter, YouTube and other platforms with my personal accounts, which then helps me see how they can be used for a health care provider like Mayo Clinic.

So we’ve established a Mayo Clinic YouTube channel, a Facebook page, and several podcasts and blogs — including, most recently, Sharing Mayo Clinic.

As of Friday the 13th, however, I’m also approaching social media from the patient perspective: yesterday I was diagnosed as having celiac disease.

So what did I do to find good information about how to cope?

My first step, of course, was the celiac disease section on

And I recalled that my team at work had produced a TV story about living with celiac disease, which is also on our Mayo Clinic YouTube channel:


But I also turned to Twitter, and was amazed at the response.

@KimMoldofsky re-tweeted my call for help:


Bonnie Sayers (@autismfamily) alerted me to the #gfree hashtag and the Gluten Free Twitter Party she’s hosting on April 3.

Gluten Free Twitter Party

@FrannLeach shared a Gluten Intolerance group on Squidoo, along with some recipes.

Kayla Eubanks (@BallinOnABudget) told me about Pizza Fusion, and Nina (@lovingyouiseasy) pointed me to @wholefoods and @KarinasKitchen. Karina’s “The Morning after the Diagnosis” post on her blog was particularly helpful. Kristie S. (@KristieTweets) had a couple of suggestions, and Tom Stitt (@tstitt) helped me get an answer as to whether Coke is OK (it is!) I also found out about lots of resources available at

And because I Tweeted about it, my celiac disease diagnosis also was posted to my Facebook profile:


…which led to several Wall comments (including a couple you see above that came within a half hour of my Tweet), and also some messages in my Facebook inbox. And I also found a Celiac Disease group in Facebook.

Some people are justifiably concerned about potential dangers of self-diagnosis through the Internet, but once a diagnosis has been made, social media tools are extremely powerful means of getting information and gathering support. 

As I write this, I’ve had my diagnosis of celiac disease for about 34 hours, and the learning about the condition I’ve been able to do in this time has been amazing.

And out of this experience, I’m also going to be getting my wife Lisa (@LisaAase) to use her Twitter account to participate in the #gfree discussions. She set up her account nearly two years ago, but has only done a dozen updates. And right now I’m her only follower. But now she has a reason to use Twitter, and I think she’s going to find it helpful in learning how we deal with gluten in our family diet.