Freedom Feature: Georgianna Reilly “The Celtic Celiac”

I recall growing up that I always had an uneasy stomach. One of the key things I avoided because of the discomfort was dairy. It wasn’t until after my diagnosis that I found out through research that this made sense, as early Lactose intolerance can actually be a indicator of Celiac Disease. I remember being a picky eater, having issues with insomnia, and being clumsy most of my childhood but it wasn’t until college in 2003 that things began to get really bad. Early in the first Semester of my Freshmen year I got a stomach virus and got very sick. Combined with the stress of being new to college, the loss of several friends to suicide in those first few months, and other factors I just never got back to being ‘myself’. Celiac Disease, being an autoimmune condition can be ‘triggered’ by physical and emotional stressors in those who have the predisposition, and I would learn later that was the case. 

At that time my mind was in a fog, and my body was physically deteriorating. I spent days in bed (or napping as often as I could) because I was in so much pain and far too fatigued to walk across the street to class, yet there were also days that would go by without me sleeping. I was stressed, overwhelmed, paranoid, irritable, angry, easy to upset yet often very flat in affect, and depressed. I was having dizzy spells that would have me on the ground in seconds, and difficulty with motor coordination that had gotten a lot worse than it was in early childhood. I coughed, wheezed, and had a runny nose almost anytime I ate. I recall I developed a minor aversion to showering because I was fearful to see how much hair would fall out of my head this time. I was however best friends with the bathroom at this point, either vomiting or using it a good majority of the time. My skin was red and spotted, and my joint ached. In full disclosure I did consider taking my own life a few times because it was all just too much.

Most notably though, I was rapidly losing weight, dropping down from 165 pounds at the end of September 2003 to just under 110 around December 2003. This is a big drop for anyone, but for a girl that is big boned and big busted this did not look healthy. Most days I couldn’t handle the pain and couldn’t keep the food down so I severely limited what I ate. At the time, having been a larger kid most of my life, I was a bit happy to be so small but I knew it wasn’t healthy. It was just how I coped. My friends began referring to me as the walking skeleton, and admitted years later, they had set up a plan to do an eating disorder intervention but never followed through.

I did seek medical assistance during this time on several occasions, only to be faced with comments about how most of it was in my head, it was just anxiety, or I was a ‘medical mystery’. Celiac Disease was mentioned once, but the doctor who mentioned it said that my symptoms (mainly the coughing and runny noise) were not ‘consistent with his limited understanding of the condition’. I also worked with the college’s nutritionist, who simply said that I needed to avoid dairy and there were no other issues she saw a pattern in from my food diary. There was little support other than the concern that I was doing it all to myself. Thus, I settled into a pattern that I thought managed what was going on: yoga, denial, meditation, long walks, minimal eating, and when I did eat eating healthy and slowly, and clamping down on any discussion of the pain or discomfort that I felt with anyone socially or medically. I continued for years like this, with my symptoms waxing and waning (including my weight), and gave up on seeking out a cause for what I felt every minute of every day for almost seven years. I graduated in 2007 with over a 3.0 GPA despite all this, and remained in my college town post graduation to work as a researcher and ABA therapist assistant. However, a back injury, and huge medical bill from being uninsured, sent me back home in October 2007. This wasn’t before a friend who had recently been diagnosed with Celiac Disease spoke to me about her experiences, and set a seed in my mind that I was not alone in my experiences and needed to find a solution.

After making the bad decision to say goodbye to gluten after my vacation, and a goodbye party in which my friends helped me eat all the gluten in the house, I went gluten free March 1st 2010 and I haven’t looked back since. I settled into the diet side of the gluten free life style rather fluidly, and my husband followed right behind. We eat only gluten free in our home, and both have since the day I started. He’s been an incredible support in this entire process, and he even is a featured writer on the site sometimes! The diet has actually helped me become more creative and open to exploration when it comes to food, without it I wouldn’t have learned to cook and try so many different ethnic foods and learn so many new skills.  ( <— Sounds like me!)

It was amazing to see the changes in my body in the first few months of going gluten free. Although I still have back pain, I went from needing a wheel chair for our Orlando trip right before I went gluten free, to being able to walk around the block. I’ve worked up from there to being able to hike, something they told me in 2010 I would not be able to do. I gained back some weight, but the bloating in my face and stomach went away. I am not nearly as clumsy, I can think and focus, I can fall asleep within minutes, and my fatigue and joint pain is far less.  

Ultimately, my diagnosis helped put my mind and my body back in sync. I am more conscious of what I put into my body, how my body and mind respond to everything, and when something isn’t right. I am empowered to seek out the support I need when I sense something is off. I find it a great asset to be so connected and understanding of my own being. While many of my symptoms subsided after a few months of going gluten free this new mindset led me to recognize symptoms that weren’t going away or other symptoms I had, which I likely previously ignored, and I have also since been diagnosed with asthma (2010), fibromyalgia (2010), POTS (2015), and pre-diabetes (2015). These are all condition which seem common in those with Celiac Disease. I manage these all with consistency and persistence, and while it is a lot to juggle I am just thankful to be healthier and happier than I was from 2003 to 2010.

You can follow Georgianna (and tell her thank you!) on her blog, Facebook, Twitter, and Instagram!

So tell me:

+ Any experiences with dealing with extremely disrespectful health professionals?

+ Any questions for Georgianna?

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