Tag Archives: celiac disease awareness

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May 2016—My 7th Celiac Awareness Month

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!

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Quietly Spreading Celiac Awareness

Summer is wrapping up and right now I am preparing to send my 3 oldest kids, plus a teenage niece, back to school. Due to some pretty significant life changes I have had to put blogging on the back burner for a while. It’s been difficult to do this, as I feel very passionate about spreading Celiac awareness and writing about gluten-related issues. But as I reflect on my summer, I realize that I have had opportunities spread celiac disease awareness, and share information about celiac disease, all summer long. I’ll share a few examples with you, and as you read, I am sure you’ll find that many of you have had similar experiences.

Back in June while we were in Boston we went out to dinner with a group of friends at an Asian restaurant.  I was already one day post-glutening, so I went out with no intentions of eating anything, but I was curious to see if the restaurant had any gluten-free menu options.  I first spoke to the hostess who was excitedly able to hand me a copy of their brand new gluten-free menu. I was actually the first customer who it was given to as it was hot off the press.  As I read through the GF menu I became very confused, as I found that many Asian dishes that are usually gluten-free, like pad thai, were not listed on the GF menu (pad thai was on the regular menu), but many Asian dishes that are almost never gluten-free were on their new GF menu.  I was particularly bothered by Udon noodles being on the GF menu, as they are almost always made with wheat flour.  I approached the manager and specifically asked him what type of flour the Udon noodles were made of and he quickly replied that they were made in the restaurant out of rice flour only.  I was surprised but excited by the possibility of being able to actually eat Udon noodles during a future visit. A few minutes later the manager came over to our table, and said that he was wrong, that the Udon noodles on the GF menu were made of mostly rice flour, but that a little wheat flour was added in as well.  We were able to have a nice discussion about how sick I, or anyone else with celiac disease, would have become after eating off of his restaurant’s gluten-free menu. He proceeded to throw all of the gluten-free menus away and promised that his establishment would be much more careful if/when they ever reintroduce a gluten-free menu. Through this experience I was able to spread celiac disease awareness.

I recently went on a job interview, which I knew ahead of time was going to include a lunch, and was told that I didn’t need to worry because the local Au Bon Pain (chain that sells breads, soups, and pastries) had some gluten free options available. I explained that since I have to eat gluten free for medical reasons, that the risk for gluten cross-contamination at Au Bon Pain was too high for me, and that I would not be able to eat there (one of my worst glutening episodes ever was eating GF soup from an Au Bon Pain that was either cross-contaminated and/or mislabeled).  I was able to negotiate having the lunch in a much safer environment, where I was able to eat without getting sick, and was ultimately offered the job. I increased awareness by advocating for my own health.

Just this week I ran into a co-worker who was recently diagnosed with celiac disease, and I asked how she was doing.  When she replied, “Fine,” I could tell in her eyes that she is really not doing that well, so I specifically asked how the gluten-free diet is going.  She broke down and confided to me that she hates having to eat GF, and that she “cheats” all the time, and then feels sick and gets neurologic and psychiatric symptoms and hates her life even more.  I was able to listen emphatically,  but then we discussed how important it is for her to stay strong and not cheat, so that she does not continue to damage her body and mind.  I tried my best to increase awareness.

I have received emails from many of you with questions and numerous messages from people with celiac disease and non-celiac gluten sensitivity who are confused, feel alone, need to vent, etc. I try my best to reply to each and every message that pops up in my in box.  By doing this I try to provide support and help to increase awareness.

If life ever calms down a bit I hope to be able to return to writing and posting articles on here, and discussing the latest celiac research like I have in the past, but if it doesn’t, please know that I am here for all of you and that you can reach me via email or Facebook at any time. Although I am never going to be able to dedicate full time efforts to this page, I hope to be able to continue on with it in some capacity. Thank you for your patience and time.