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).

Most notably though, I was rapidly loosing weight, dropping down from from 165 pounds at the end of September 2003 to just under 110 around December 2003. Regardless of if I was a bit overweight at the beginning, dropping almost 50 pounds in about a 4 month period is NOT something anyone should do, let alone someone who is big boned and big busted, so there clearly was an issue. My friends began referring to me as the walking skeleton, and I was obviously not healthy. The reason behind this was I had basically stopped eating. Every time I ate I would be in agony. Most days I couldn’t handle the pain and couldn’t keep the food down. So, I stopped eating for the most part, only eating an apple or a yogurt or some carrots every day. I KNOW it wasn’t healthy but this is how I coped. At the time, having been a larger kid most of my life I was a bit happy to be  so small but I knew deep down something was up. My weight would continue to drastically fluctuate until a few months after my diagnosis. 

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. 

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)

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 doctors 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. 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 doctors actions and explained that there was no doubt in her mind that I had Celiac Disease.

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. 

Celtic Celiac @ http://celtic-celiac.blogspot.com/