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Wednesday, November 21, 2012

My Celiac Journey :: Part Three


This is part three of the story of my first year with celiac disease. The rest of the story is here:
My Celiac Journey Part One
My Celiac Journey Part Two
Beginning to live a life without gluten did a whole lot of good for my body! However, at the same time such a huge shift in the way that I cook, eat, and function had it's negative effects on my emotions as well.
I became fearful of food. Mealtime would have my stomach full of butterflies....
"What if this food is not completely pure and I didn't notice it, what if some crumbs get mixed in, what if this causes me to get sick...it will take weeks to recover my system from that again!" That was a constant thought process at mealtimes.
I began to understand some of what it must feel like to have an eating disorder - a complete and total distrust of food. The feeling that it is eating that causes so many of your problems.
If the fear of food weren't enough there was also the overwhelming amount of work to be done in order to eat gluten free. Once I had convinced myself that I needed to eat and that I could eat with reasonable assurances that my body would be safe from gluten there was still all of the work to creating a gluten free meal that needed to be done.
Unless you have all the money in the world to spend and are willing to spend it all on gluten free foods, there is no such thing as a "quick and easy" gluten free food. Feeling tired and just needing to eat something could not be solved by macaroni and cheese or a frozen pizza. EVERYTHING has to be made by hand and by scratch.
If I want pizza, I have to begin at grinding the rice/millet/whatever to make the flour. The process is long and when you're super hungry or tired it just doesn't seem worth it. Eating gluten free (and, especially, eating gluten free at work) needs careful planning in order to be executed effectively. And, almost all of our recipes had to be adapted or I had to find a new gluten free version.
It took several months, and a few days spent working on it during the summer, but I began to put together a  way to cook that would allow me the ability to plan somewhat ahead so that the whole process seems less overwhelming. I am nowhere near perfect in this matter, but I am trying and that part is becoming less overwhelming.
Americans socialize over food - large family meals, inviting people over for dinner, going out to dinner, potlucks and picnics, family nights, and banquets. Something about food is so inviting and makes an excellent backdrop for social experiences. But to be a part of these social experiences I either have to give a list of restaurants where we can eat (because they have an item I can order fairly safely) or I have to bring my own meal.
That may sound like a small thing...but, it brings with it a total feeling of being a bother and an outcast in such situations. People will say that it's fine with them but in reality it just feels a bit odd and raises a lot of questions. People are naturally curious, and while I don't mind sharing my story (I wouldn't be publishing it if I did), I also don't want that to dominate the conversation or to make people feel uncomfortable about eating with and around me. I often feel like celiac does that.
I don't like being the one who puts limits on where a group of people can eat if I am to eat with them. I don't like having a shared bowl of chips or fruit with people and me having to have my own personal bowl so as not to cross contaminate. It just feels like I am sending off the message that I am distrustful of others; and I'm not.
I am getting more used to it, as are the people around me, but I often HATE bringing a packed meal somewhere where people are eating home cooked food - I never want it to feel like I don't want to eat their cooking or consider myself "too good" for their food or any other message that bringing your own replacement meal can easily give off.  But I just can't risk getting any gluten in my system - it just has too many long reaching ramifications.
I say all of this, not to make a person say "Oh, poor girl." But to share my story. The past year (and today it has been one year!) has been incredibly difficult. But, it has been worth it...
- to be able to engage in projects around the house with my husband
- to be able to run and zumba with my students
- to be able to be in social situations without fear of sudden, intense illness
- to have the energy to pursue my interests in my free time
- to be able to sleep most nights
My body has begun to heal from celiac. There is still more healing to do and more changes to be made to heal other health issues. There is still learning and planning to make this lifestyle continue to work long term and with a family. But, with the first (and probably hardest) year of the journey into gluten free living behind me I can say that it has been good. It's been hard, but good.
PRAISE GOD for healing!
A Little Bit More...Picture Evidence of Physical Healing
(In which I wonder why I am about to share the following picture :)
(The picture on the left is from 2010 - I weighed about 20 lbs more than I do now. Over the next year, despite a healthy lifestyle, I would gain another 30 pounds due to celiac completely ravaging my body. I have no pictures of myself during that time because I HATED them! The picture on the right was taken this past summer, 2012. 50 pounds lighter than when I received the diagnosis and feeling so much more healthy!)

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