Today marks Celtic Celiac's 3 year Anniversary.
In my first post I wrote "I hope that I can make this journey valuable to the Celiac and gluten intolerance internet community" and I truly believe I have. However, I can always do better in helping to spread awareness. Part of developing an awareness is sharing your story with others, and if it wasn't for the story of a friend's diagnosis I would have never have pressed to get tested for Celiac Disease. I have shared my story many times before, such as on my first anniversary of being gluten free and during my piece on Body Image and Celiac Disease but that has always been in bits and pieces. It has never been the entire story, and never touched on my actual process of diagnosis. Today, to make my 3rd year as a blogger, and to honor Celiac Awareness Month, I would like to share a bit more detail now about this journey, in hopes that my story can help someone else develop their own awareness.
 |
| Me, early 1990's |
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, 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 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.
I had a new reality physically, and emotionally, and it wasn't one I was really ready to handle. 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, 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 and had a runny nose 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. Overall, my entire body from head to toe ached, and in all honesty I was ready to take the route that several of my friends had and take my own life. I can't tell you how many notes had been scribbled out, or how many plans had been plotted in those early months, however, personally seeing the impact of this on others kept me from doing it.
 |
| Me in June 2004, after gaining back a bit of the weight. Note the frail arms and legs, and defined bones (far to skinny still). |
I remember going to the university health center several times with complaints between September 2003 and December 2003 about the above, always to get the response of "Your doing it to yourself, there is nothing wrong with you", "it's just anxiety", "it's all in your head", "Your a medical mystery and we can't help you, no one can", and "you must have an eating disorder". My friend's were convinced I had an eating disorder, and wanted to stage an intervention. There was little support other than the concern that I was doing it all to myself from all directions.
Being so young, feeling as if I had no support what so every, and never having been one to seek out assistance from doctors I settled into a pattern that I thought managed what was going on: yoga, 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. I felt I would get no where, and was convinced that everyone thought it was all in my head, so why press it further? I continued for years like this, and gave up on seeking out a cause for what I felt every minute of every day.
A typical day for me from 2003 until 2010 consisted of some degree of chronic fatigue, depression, difficulty concentrating/thinking, and physical pain. Although it waxed and waned, as did my weight, I began to manage my symptoms by isolation and denial. I got real good at it, so good in fact that I doubt many of my friends realized this was the reason behind many of my quirks at the time. My social life had been impacted, as I didn't have the energy to do much or the belief anyone was truly there for me, yet I tried my best to still get out.
At some point in College Celiac Disease was mentioned, but only as a pass thought by a doctor that saw me as a medial mystery. Then, in early 2007, right before my graduation from college, I made a new friend who had recently been diagnosed with Celiac Disease. She spoke to me about her experiences, spread her awareness and set a seed in my mind that I was not alone in my experiences and needed to find a solution.
A typical day for me from 2003 until 2010 consisted of some degree of chronic fatigue, depression, difficulty concentrating/thinking, and physical pain. Although it waxed and waned, as did my weight, I began to manage my symptoms by isolation and denial. I got real good at it, so good in fact that I doubt many of my friends realized this was the reason behind many of my quirks at the time. My social life had been impacted, as I didn't have the energy to do much or the belief anyone was truly there for me, yet I tried my best to still get out.
At some point in College Celiac Disease was mentioned, but only as a pass thought by a doctor that saw me as a medial mystery. Then, in early 2007, right before my graduation from college, I made a new friend who had recently been diagnosed with Celiac Disease. She spoke to me about her experiences, spread her awareness and set a seed in my mind that I was not alone in my experiences and needed to find a solution.
 |
| From left to right: Me, My friend who spoke to me of her diagnosis |
By this point, I had learned to live with my symptoms to a 'tolerable' extent, and had no health insurance. 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 resulted in me ending one of those positions and having a medical bill I was unable to pay. As a result, I ended up moving home and meeting my now husband in October 2007.
I got a job as a researcher, and settled into the rented life with the how Husband and a friend all by June 2008. From October 2007 to 2009 my symptoms began to worsen again. I personally believe that my back injury, which left me in more constant pain, caused the symptoms to flair up or for me to personally not find them as tolerable. The seed my friend had planted about diagnosis finally began to grow, and in Fall 2009, 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 almost 8 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.
 |
| Mike an I at Epcot (after I had gained back 40 of the 50 I had lost) |
She is a kind physician, and was great at explaining it all to me in an understandable way. 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.
In the end, 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 and I haven't looked back since. 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 CD it accounted for the respiratory responses to eating it) and several oral allergy conditions, and asthma. I was later also diagnosed with Fibromyalgia, which accounted for many of my joint and muscle pain and is common in those with Celiac Disease.
I have grown in health and happiness ever since.
 |
| Michael and I on our wedding day. |
So, there you have it. My journey to diagnosis was a good 7 year process, luckily shorter than the journey for many people who end up with a Celiac Disease Diagnosis. It had many twists and turns, and tried myself, my friendships, my relationship, and my faith in the health care system. Although complex, the lessons we can often learn from sharing these stories of diagnosis are often simple. To sum up what I hope people get from mine:
1. Don't EVER put your health second just because someone is telling you it is all in your head.
2. Be an advocate for yourself and your needs. If you want a diagnostic test, or information about your options, ask for it.
3. If a doctor is rolling their eyes at you, or is acting negatively towards your reasons of being there. RUN. Seek help elsewhere from someone more professional and compassionate. YOU should be comfortable with you physician.
4. Remember that Celiac Disease can have a variety of symptoms, some of which you would never expect. If you think it might be a reason behind some of your issues don't hesitate to ask.
BUT MOST IMPORTANTLY:
5. Don't be afraid to share your story. Simply sharing your experiences, your dietary needs, your past symptoms, ANY of it could be a way to plant a much needed seed in someone else's mind. Whether they are ignoring symptoms, ignorant of the disease itself, or simply sick and not sure why, discussing CD can help plant that seed and potentially diagnose the thousands of individuals out there who have Celiac Disease yet are undiagnosis.
I hope this story was helpful. Reflecting on it sure helped me remember how far I have come in these past 3 years. As I write this, and reviewed the photos I wanted to include, I couldn't help but wonder how I was able to get through it, nor how 'stupid' I must have been to not seek help sooner. I spent years in physical and emotional agony, and it is hard now to admit that to myself... BUT, although it was a tough road, it has led me to where I am today and for that I am thankful. I have a loving husband who has been a beacon of light since 2007, and I am slowly developing myself in a new direction that is full of great health!
Happy Celiac Awareness Month!
I am happy to have spent the past 3 years as a blogger for the gluten free community!
.png)
