Tuesday, September 17, 2013

Marisa’s Menu: Celiac Awareness Day

Marisa’s Menu: Celiac Awareness Day

As many of you may have noticed, especially if you logged into Facebook at all recently, September 13th is Celiac Awareness Day.  Not being officially diagnosed with this, I still very much identify with the need for awareness.  A good friend of mine, who has a heart of gold - but like me - a host of autoimmune issues related to her gut, brought up another aspect of the awareness, and I wanted to share it here. She rarely posts online, but on this day of reflection, she said the following…...

“On today, Celiac awareness day just thought I'd get up on my soap box for my once or twice a year lecture. I really wish my autoimmune disease wasn't the butt of so many hipster/portlandia like jokes. Yes I have a sense of humor and laughter is the best medicine and lord knows I've made a few myself but I don't see too many other autoimmune diseases used for laughs. As many Celiacs suffer for years and can have complications like cancer, seizures, other bowel diseases, and overall shortened lifespans or poor health I just don't see the laughs. So the next time you see or hear someone ask about gluten free, don't assume they are on some fad diet or being trendy as most of us have a serious disease and you have no idea what we have been through.”

I shudder when I hear that because I know the struggle she has been through.  And I can relate to it with my own.  I notice the looks I get from those around me when I inquire about gluten-free.  I also have even overheard people making rude comments of judgment.  It takes a lot of compassion, patience, and self-control at times to not react.  The three deep breath rule seems to work for me thus far.  But the best thing that occasionally does happen, which I try to focus on vs the other situations, is when someone overhears my gluten-free inquiry, and they actually approach me and sincerely ask valid questions, seeking some type of information to prevent their own ignorance.  I LOVE THAT.  I had someone today strike up a conversation at the grocery store, and it was wonderful.  She valued what I had to say, and I felt good knowing that because of that interaction, another person now had a better sense of gluten-free, and especially the seriousness of Celiac Disease, and other food-related chronic conditions, and autoimmune diseases.  

I go from being conflicted with frustration to angry at the people I encounter who are led by ignorance and poor information.  Some of those people are outward and open about their inability to believe that anything I am eating could possibly be causing so many of the problems I have had, and especially the mental component of what an unhealthy gut can be responsible for.  But then there are those who nod silently, and just choose to make those comments behind my back.  Either way, I just sometimes wish I could literally knock some sense into these people. Not in a vengeful way, though.  I just want more people (well everyone - but I know that is not realistic) to UNDERSTAND why I choose to be gluten-free.  And I want the medical community to educate themselves further on this subject, and share the seriousness of it with their patients.  I know I have mentioned it before, but I still have acquaintances who have been diagnosed with Celiac Disease.  Yet, they still continue to eat gluten.  And while that is their choice, my frustration lies with their physician.  Because they were actually TOLD that they should simply try to avoid gluten.  But that if they have it on occasion it should be fine.  Not a mention the extreme damage that it can do to their already damaged intestinal wall.  Without warning, further damage can and will lead to more diseases, a potentially shorter life span, and overall, it jeopardizes their wellness.  It is like a basic diagnosis.  Here is what is wrong with you.  There may be a pill some day for it, and just try to avoid these things, if you can.  I am baffled by this type of medical care.

So, the best I can do right now is continue to advocate for myself, and others in the gluten-free community.  I feel very fortunate every day to have the gluten-free challenge as part of my support system.  It has done wonders for chasing away those feelings that I just drudged up about being frustrated. I didn’t mean to get into a rant or be negative.  I just was feeling this all week, and Celiac Awareness Day managed to bring more of those feelings to the surface.  I am glad that so many people are becoming active in the community, and speaking up and out about gluten-free.  It gives me hope that my desire for a better awareness and understanding is actually possible.

(1) Sporting my special gluten-free label that decorated my dish at Waldo Pizza

(2) Gluten-Free signage at the Whole Foods in Henderson, Nevada

(3) My visit to OMG... It's Gluten Free near Chicago, Illinois


Elizabeth A. said...

Well said. The harder thing for me is not other people who doubt that I need to be GF. It is my own doubt that gives me problems. Even though gut pain that I had for years went away, and even though other things got better, I still cannot seem to 100% believe.

uk voucher codes said...

Thanks for your sharing :)


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