Having celebrated our two-year wedding anniversary this
past week, I have done a considerable amount of reflection on the past couple of
years, and how I have gotten to a place of confidence and peace with my
autoimmune diseases and gluten free lifestyle.
Looking back on my life I see a whole lot of
challenge and struggle related to autoimmune diseases; challenge and struggle I
would not have overcome so earnestly without the support of my parents and
siblings. My parents were the first to
teach me the meaning of grace, and I got a lot of practice with it during my
high school years and struggles with Graves Disease and undiagnosed Celiac
Disease. It was difficult and confusing as
a 15 year old to recognize and somehow try to reconcile my adult
teacher’s ignorance about my condition, and on top of that show her grace when I
was sure she fell miserably short of it.
Years later, after having been married for only 5 months, my
newly-wed husband had to not only adjust to non-touring-drummer married life,
but the drastic lifestyle change that accompanies a Celiac Disease
diagnosis. I was sure he was going to be eternally dissapointed and annoyed by my new way of life, but I’ll never forget the first
night after my “you definitely have it” endoscopy: Austin (my husband), came
right home from work and cooked the first real meal he ever had in his entire
life – Plain grilled chicken and…honestly, I cannot even remember, I was still
loopy from the anesthesia J. He was scared and cautious while preparing my
meal, mostly because he understood the seriousness of this change, but partly
because he would be using my brand new Cuisinart Green Gourmet pans!
I was so grateful for his effort, care, understanding and attentive response.
Austin and my family have also supported me in making our
house 100% gluten free, which I always recommend others to do as well, although
I realize that is not always possible. Whenever
my parents and my sister, brother-in-law and my nephews and niece visit, they
eat completely gluten free while here. Austin
eats gluten free at home, but I encourage him to nosh on some wholesome,
vitamin-mineral-and-fiber packed whole wheat when he’s out with his friends.
My family’s support continues to amaze
me and extends beyond keeping my house gluten free: my parents have taken an
active role in (and my dad has become President of) their hometown Celiac Support
Group in Western New York “Against the Grain,” and I look forward to the calls
I get from my niece and nephews when they’ve found a new gluten free product at
the store and can’t wait to bring it next time for me to try, I also especially
love when Austin grills me about something I’m about to eat when we are out of
the house, “is that GLUTEN FREE?!” And what a bonding experience it’s been for
my brother Ricky and I who are currently the only two (obviously there are
others, but they’re being stubborn and will not get tested) in our family who
share a Celiac diagnosis. I am so proud of the way my immediate family has embraced and champoined our gluten free way of life!
I have been blessed with a wonderful support system that also
includes friends who have Celiac, their spouses and other friends who are just
sensitive and gracious enough to learn about this disease and how best to accommodate. I worry about my Celiac peers, though, that I’ve
met that do not have a support system at home or otherwise.
If you have Celiac please speak up and advocate for our
community at home, work, school, at restaurants and the like to help others
understand our lifestyle, especially for those who feel as if they do not yet
have the voice to do so. At the same time be gracious in understanding that others may be completely unaware of what it is like to live with Celiac Disease. Please also get
involved with your local support group to connect with others who may not have
the support with which you may have been blessed.
If you do not have Celiac but know someone who does, please
consider the sacrifices and challenges they face on a daily basis. Please be sensitive and aware that while the
gluten free lifestyle may not make sense to you, it is the only course of
treatment for this disease and needs to be taken seriously. You, too, can support and advocate on behalf
of those with Celiac Disease by getting involved with a local support group,
participating in a charity run or even just being sensitive to the needs of
those who are gluten free.
To learn more about Celiac Disease and how you can get
involved:
Click here to see a list (although it is not exhaustive) of
Celiac and Gluten Free Support Groups by state.
Click here to visit The Celiac Foundation’s website.
Click here to visit Columbia University’s Celiac Disease
Center website.
Click here to visit The Maryland Center for Celiac Research
website.
Be well,
Lacey
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