Connecting the celiac disease and food allergy/intolerance community together by sharing our stories to food freedom. From our beginning struggles to striving after a diagnosis, we can all relate and help each other out by sharing what we’ve learned and our unique personal journeys.
As long as you keep sending in your amazing stories and keep giving me incredible feedback, the Freedom Feature will be able to grow, inspire, and accomplish its goal of being a platform for us, food allergy THRIVERS, to share and connect! I love getting everyone’s emails back to me with their stories and answers to my questions. We all have so many similarities in our journeys, each and every one is so different. That’s why I’m always so excited to share these stories with you all. They’re inspiring, heart-breaking, beautiful, and real. No matter if you have food allergies or not, I know we each can take something away from them. So today I’m excited to share Georgianna, from Celtic Celiac, (who just celebrated her 6 year celiac anniversary) and her amazing journey to freedom.
Background: Who are you?
I am an Irish American girl (or really woman I suppose at this point seeing as I’m in my 30s) living a gluten free life on Long Island New York with my husband Michael (an aspiring Registered Dietician), our four chickens, a crippled bearded dragon and a few fish. Professionally I have various roles. I am a social worker, writer, editor, researcher, and owner of the site Celtic Celiac. I’m passionate about restrictive diet management, the psycho-social influences of health, food justice issues, and preventative health. I also love the outdoors and try to hike, walk, and explore as often as possible. I’ve recently started purchasing more camping equipment so I can get more serious about camping and longer hikes.
What was life like before your diagnosis?
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.
How did you find the right doctor and end up getting properly tested and diagnosed?
The years of being told it was ‘all in my head’ left me feeling like a disempowered patient. I was afraid to speak to medical professionals about anything, and had limited treatment for my back injury for almost two years. By fall 2009 the back injury had not gotten any better, my symptoms from college were full blown again and I had had enough. With a new frustration and confidence in my own needs (as well as health insurance) I finally pressed my Primary Care doctor to test me with Celiac Disease. I had the standard blood work at the time completed, Anti-tissue transglutaminase antibody (tTG – IgA and IgG), which came back positive. Next, I meet with a GI doctor to complete my biopsy work. This experience was not a positive one. When the doctor introduced himself he said “Oh so YOUR my new Celiac Sprue patient, this should be so fun. Those patients are frustrating”. The self-advocate in me now would have ran, but just wanting an answer after so many years of troubles I had the biopsy done. His response? “You have some damage, but personally I can’t diagnose you because it isn’t enough to warrant a diagnosis”. He continued to go on about how he didn’t believe Celiac Disease was a real condition. I naively gave up again on finding a solution and continued to eat gluten, now sicker and angrier than ever after having gotten so close to a reason for my years of issues.
In January 2010, a few days before going on a 14 day vacation to Orlando for the first time, I met with my primary care physician for a physical. During this, she asked me how my gluten free diet was going, at which point I explained to her the GI doctor’s comments and how I had not gone gluten free. The look on her face spoke a thousand volumes, she was appalled. She finished her physical silently and asked me to meet her in her office afterwards, which was not common practice. She explained that she had received the paperwork from the GI doctor, which didn’t include a diagnosis but did indicate damage. Based on this, and the blood work she had completed, she had concluded he had discussed with me my diagnosis and had set me on a gluten free diet. She asked me again to confirm what he had said to me, and proceeded to call the doctor and curse him out. Apologizing for her actions she showed me the biopsy results, indicating damage to my intestines in almost all areas, apologized for the GI doctor’s unprofessionalism and explained that there was no doubt in her mind that I had Celiac Disease. ( <– BAM! Wow!)
She is a kind physician, and was great at explaining it all to me in an understandable way. She was truly my advocate for diagnosis, once I myself was over my fear of talking to physicians, and I left that meeting with a finalized diagnosis, and an established understanding that I was to work with a nutritionist, and visit a food allergist, ENT doctor, and endochrinologist to determine if anything else was going on. She is still my primary care doctor today. Over the next few months I found out that not only did I have Celiac Disease but I was also experiencing Gluten Ataxia (cause of the coordination, dizziness, and balance issue), had many seasonal allergies as well as a mild allergy to wheat itself (although unusual in Celiac, it accounted for the respiratory responses to eating it) and several oral allergy conditions.
How did life change after diagnosis?
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.
My diagnosis also helped me professionally. Because of my experiences I developed a professional interest in restrictive diet management, food justice and food access issues, as well as preventative health and health promotion. I believe we need to empower all individuals to be advocates for their health, and that medically professionals should not be judgmental of conditions (like Celiac Disease) which influence behavioral health. Everyone should have access to services and supports that promote healthy choices, meet their medical and psychological needs, and improve quality of life.
Why did you start your blog? What did you hope to achieve out of doing so?
What makes your blog unique and what does it (or what you hope) add to the community?
I believe my social work and research experience help give my blog a unique voice. I have an entire set of posts dedicated to the overarching theme of ‘wellness’ and am not afraid to speak about topics that can be influenced by a gluten free or restrictive diet such as self advocacy, depression, eating disorders, mindfulness, the work environment, relationships, and body image. I am currently working on a piece about food allergies and bereavement, for example.
Do you have a Celiac/Food allergy tip to give?
Being gluten free requires a lot of work, and it can be exhausting and annoying, but mindset is a big piece of why individuals have a difficult time living gluten free. I recommend trying to maintain a mindset of ‘plenty’ rather than ‘none’. In other words, focus on what you can eat rather than what you cannot. Ideally this would look like eating naturally gluten free items in the beginning, then getting creative with introducing gluten free alternatives and trying gluten free things you wouldn’t otherwise eat. You can find alternatives to almost every item you ate before you went gluten free with a little bit of googling, Facebook group questioning, blog reading, and exploration. Even writing a list of what you CAN eat that you can refer to when you feel down about your restrictions is helpful. I’ve done this even years into the diet when I get frustrated. It is a great way to have a rebuttal for those folks that say “but what can you eat?!”, just start reciting your list! Make gluten free fun, and remember that you do this for your healthy! (<– Love it!)
Have any favorite gluten-free foods or brands to share?
I like brands that are socially conscious, so I love Larabar with their fair trade ingredients, recycled/recyclable packaging and #ShareRealFood partnership with Feed America. Plus they are delicious, have no added sugar, and are typically high in fiber and protein.
Can you share your favorite recipe with us?
What do you hope to see in the future; for yourself and the gluten-free/food allergy community?
So tell me:
+ Any experiences with dealing with extremely disrespectful health professionals?
+ Any questions for Georgianna?
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