I was diagnosed with celiac disease in 2010, so this May will be my 7th celiac awareness month.
In May 2010 I was totally overwhelmed with my celiac diagnosis and still trying to get the hang of the gluten free diet, i.e. trying out different types of GF bread, pasta, etc., at the point that I felt I needed to be able to replace every gluten-containing food that I liked to eat with a GF version, and figuring out how to manage a shared GF/non-GF kitchen. I was very scared to eat outside of the home, by the thought of having to be GF while traveling, etc. My main focus was learning all about which foods and ingredients I needed to avoid and trying to explain my new diagnosis to my family and friends. I had no clue that celiac awareness month even existed that year.
In May 2011 I was recovering and healing from a miscarriage that I had experienced the previous month. It happened about a day or two after I had an awful “glutening” episode and I kept blaming myself for the miscarriage happening, that it was my fault for not being careful enough with my diet. Looking back, the timing may very well have been just a huge coincidence, but at that point in time I did not feel that way and really beat myself up.
In May 2012 I was about two months postpartum from baby #4 and pretty sleep deprived, so I do not remember much about this month other than that I was not only GF but dairy free (my oldest had a severe cow’s milk protein allergy as an infant, and I did not want to go through the stress of that again). I am pretty sure that I did not celebrate celiac disease awareness and I’m not even sure if I knew about it as I was really not following celiac web pages or active in the celiac community other than checking out posts on celiac.com and a few other online forums.
In May 2013 I was all over celiac awareness as I had developed celiac-related neurologic symptoms (a neuropathy and episodic brain fog) in 2012. Prior to developing these symptoms I had no knowledge of the link between celiac disease and neurologic symptoms. This experience prompted me to start to really delve into all of the celiac disease research I could get my hands on and learn as much as I could about this disease–which led me to start this page in late 2012. I figured that if I was going to spend such a great amount of time learning about celiac disease that I best share what I learn with others.
In May 2014 I was at the point where I felt totally comfortable navigating dining out, traveling, etc while being GF and major glutenings had become few and far between. I felt “normal” again and my gluten-induced neurologic symptoms had totally resolved. It was also just around this time that my youngest daughter had symptoms that were concerning for possible celiac disease and that we had to start a gluten challenge (she had a labs and a biopsy in June 2014 and her tests were all negative). This month also stands out in my mind because it seemed like everyone I knew had friends, family members, etc who were being diagnosed with celiac and needed help and guidance. I had integrated helping others with celiac disease into my life.
In May 2015 following the GF diet and teaching others about celiac disease were second nature, and I had also built an amazing celiac support system through having this page. However, right around this time I became very overwhelmed trying to balance keeping this page up with all other aspects of my life so it had to fall to the bottom of my priority list. I actually considered deleting this entire blog many times, because I had neglected it so much, but then couldn’t bring myself to do so since I had dedicated so much time and energy to it since its inception.
In May 2016 I hope to be able to engage more with my readers and the rest of the celiac community and to read, write, and post more often, to really get back into the swing of things. I have a new website in development that should be up and running sometime this summer too. I also have a lot of ideas for the future of this page, some of which I would love to accomplish by my 8th celiac awareness month in 2017.
I would like to thank all of you who have been with me and supported me on my celiac disease journey—there are too many of you to name, but if you read this I hope that you know who you are and that I appreciate and love you (even if we’ve never actually met face to face).
Happy Celiac Awareness Month 2016!