the patient celiac

I Forgot that May is Celiac Awareness Month!

0 comments May 10, 2019

For the first time in 10 years I forgot that May is Celiac Awareness Month!

If you would have told me 5 years ago that this was going to happen I would not have believed you, as I was at the height of my celiac advocacy efforts.

I became a celiac advocate after my celiac diagnosis as I was appalled by my own lack of knowledge about the disease, as well as the huge knowledge gaps in the medical community. I figured that if other physicians and I were not well versed in the symptoms and diagnosis of celiac disease, that the general population was probably in the same boat.

At this point the website was the one of the most helpful online resources that I could find, so I signed up as “Jebby” on there. Then I made a huge mistake of posting about my mistaken belief that Reese’s Peanut Butter Cups were no longer GF, so I slowly stopped interacting and posting on there because I felt stupid and ashamed of myself.

So, I started to research EVERYTHING that I could related to celiac (scientific research, case reports, medical opinions), and I posted written summaries of the knowledge I gained on a blog I created through WordPress, The Patient Celiac ( When I started my blog I anticipated having 5 readers or so, but it grew to a point that I had close to 20,000 views of my blog per month. This was right around the same time that some other major celiac blogs were growing, including Gluten Dude's. I was able to connect with other celiac advocates and really felt like I had found my tribe.

I began to be flooded with emails from people around the world asking questions about gluten-related disorders, advice about living GF, etc. I even received multiple messages from a young man in North Korea! At the beginning I read and responded to every message. With time, as there were an increasing number of messages, I realized that I was dedicating hundreds and hundreds of unpaid hours every year to my blog!

During this time period I was working full time as an MD in an intensive care unit, had 4 children under the age of 8, and was training for and running marathons. I developed burn out and depression and had to take break.

For the most part my break in celiac advocacy has continued…

Fortunately, there are now tons of resources out there for those with living with celiac and other gluten-related disorders. And so many more gluten free products and options for dining out. It’s incredible to reflect on how different it was to be newly diagnosed with celiac just a decade ago!

I’ve gotten to the point that I rarely even think about having celiac anymore, it’s such a “normal” part of my life. When I was diagnosed I never thought I would get to this point.

Although I am not on my social media sites or blog very much, I am around in a limited capacity. I’ve noticed a significant uptick in visitors to my Facebook page this month, so I felt obligated to share my story and to let you know I am here.

In the last few years we have moved back to Cleveland (my hometown), my kids are finally all in elementary and middle school, I am working part time as a neonatologist and assistant professor of pediatrics at a large academic children’s hospital, and I have also started a small business (newborn medicine home visiting service called Primrose Newborn Care).

My plate is full, but balanced, and I am no longer burned out like I was. I do plan to keep my webpages going to be a continued resource to the celiac community, but am pretty certain that my days of dedicating hundreds of hours to celiac advocacy are over.

If you read this far, thank you!! I will still post on here from time to time.

With love and well wishes,

Jess Madden, M.D.

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