This has been a post/letter which has been a work in progress for two years. For the past two years, I have had the new years resolution to send a letter to the 22 doctors who I had seen throughout the five years of misdiagnosis. After finally receiving a great report from my GI yesterday, it was time to put the finishing touches on this piece. It is something I felt I needed to do.
Not only to gain closure for myself, but as a way to spread awareness about gluten-sensitivity. The doctors need to know what the other side of the rainbow looks like, after what was a treacherous and long storm.
As I look back and reflect on this journey, I am reminded of the great people who helped me along the way. However, more memorable were the one’s who did more damage than good; not to my physical health, but to my mental and emotional health. Claiming it was “all in my head” or insisting I had an eating disorder, even after social workers and psychiatrists stated the reason why I didn’t eat was because food left my body in too much pain. Despite this, I am no longer angry.
Life is too short to continue to dwell on all the typical adolescent memories I missed out on. I’m 23 and have so much life ahead of me.
There are a few reasons why I am most thankful for this bumpy road I traveled; the lessons I have learned, my school counselor, the physician who diagnosed me, my strong support system, my faith, persistence, and this blog.
I learned very quickly, in negative situations there is always a silver lining; something positive, a lesson to be learned, or a person to connect with. I could of very easily chosen to continue to be deathly afraid of the medical field, hold anger against all the doctors who treated me poorly, or dwell on the “if only’s”. However, acting in such a way will only affect me; making me a prisoner of my past and holding me back from enjoying the many gifts that I have been blessed with.
This is something I learned as I began to heal from all the hurt and trauma.
You have been great teachers to me; something I would not be able to understand until I chose to go into the field of counseling.
You can call the people you serve, patients, clients, or consumers. Whatever language you use we are still a people who deserve the same dignity and respect. As I reflected in many of my classes I learned the power of being validated, I learned the power of the counselor client relationship, and I learned the importance of listening. Not by textbooks, but by my own personal experience with doctors.
For years, I was told by many physicians there is “nothing we can do,” “just take this medication,” “it’s all in your head.” Many didn’t listen to me, and because I was a pediatric patient they turned to my parents. I may have been young, but I was the one going through the physical pain, and my concerns deserved to be heard, not dismissed.
This continuing pattern of interaction caused me to lose trust in others, caused me to shut down, and caused me to question my own thoughts.
Thankfully after my freshman year of college, I was blessed to meet an outstanding physician who believed in me. Who validated my feelings, and knew despite negative test results, gluten was not good for my body. She gave me a gift that I am forever grateful for. She gave me the ability to take control of my life again.
Simply by her genuine care and concern
As one of my counseling professors would say, she was my “holder of hope”
By choosing to truly listen, she has made all the difference in my life. This is a feeling I will forever carry with me when I enter into the counseling field.
There is not much research on gluten sensitivity. In fact, research on gluten sensitivity is where celiac disease research was 20 years ago. However, I am living proof that non-celiac gluten sensitivity is real! I may have tested negative for celiac, but I am just as sensitive as a patient who has been diagnosed with celiac disease. Once a few simple gluten-filled bread crumbs were found on my plate when I was served a gluten-free meal. This left me sick for days.
It took some time and some trials and errors, but taking out gluten turned my life around dramatically. A few months after going gluten-free I learned I was sensitive to dairy and I just recently developed some food allergies. However, I wouldn’t change my food restrictions for anything.
No longer am I catching every illness under the sun, making frequent trips to the ER, constipated for days/weeks, feeling anxious or depressed, looked 7 months pregnant as a result of bloating, and have gain a considerable amount of energy back. Most importantly, food doesn’t hurt; it never should hurt anyone in the way it hurt me for years!
Today, almost four years after being diagnosed with non-celiac gluten sensitivity, I am thriving, vibrant, and full of life. I am not the frail, ill-looking teen you treated many years ago. Last year I graduated the University of Scranton with honors, and am currently pursuing a graduate degree in professional school counseling at the University of Scranton. As a result of everything I went through as a teen, my long-term goal is to obtain my LPC so I can help children and adolescents who have celiac/gluten sensitivity, food allergies or other chronic illnesses cope with what is a huge life transition.
I found the positives in a negative situation and became empowered by my diagnosis. For two years now I have written a gluten-free blog, Embrace G-Free, which strives to empower others to live their best life, while also equipping them with resources and recipes.
When I was diagnosed I felt so alone, but this is far from the case when it comes to the gluten-free community! We are a strong, powerful, and supportive community. The next time you diagnose a child or adolescent with celiac or non-celiac gluten sensitivity, please don’t just tell them and their parent’s what they can no longer eat. Equip them with resources; such as the ones found on the National Foundation for Celiac Awareness website, Gluten Free Drugs website address, and the contact information of the dietitian at the Celiac Disease Center at Columbia University. Even feel free to give them my blog address. Although I am not in the medical field I am always willing to lend a helping hand and talk from experience because it was from the help and experience of others that helped me to make a successful transition.