Celiac, celiac, celiac

I feel like my life revolves around this disease. Granted, I’ve chosen to write a blog about Celiac and feel the pressure to talk about it daily. But I talked about it all the time before, too. It’s just now I’m not wearing my people out talking about it. Now, I’m talking to you all about it instead. 😉

For one thing, I went to Nashville to participate in a clinical trial for an investigational medication and I live 4 hours from Nasvhille. I put most of my life on hold and put a lot of pressure on my family so that I could do that. And then I got kicked out before the study was finished!! Ugh!

I don’t go out to eat often and when I do it is at the same few safe places over and over again. They know me at these restaurants and I often order the same things over and over again. But still.

This week I’ve binged on gluten free treats from Aldi and made myself sick. I even ate gluten free leftovers for lunch and my body revolted. Revolted to the point that I had to speed through my neighborhood to make it home just barely in time to make it to the bathroom.

I am helping to plan the food for my son’s boy scout camping trip this weekend. None of the boys or adults have food allergies or issues. I still think about making their meals gluten free. I don’t have to make gluten free meals, it is so ingrained its a habit now. I was thinking about how to make gluten free monkey bread – not necessary – I can do it the easy way with cut up biscuits. (I use my Celiac as an excuse not to go camping – shhhh – don’t tell my husband! Too hard to accommodate my diet while camping.)

This disease just takes over your life. It changes the way you eat and think about food. Food is pleasurable occasionally but for the most part it is a way to get nutrients into my body to fuel my day to day activities. Food is a tool. Food is not simply for pleasure.

It changes the way you look at the world. It can make you see the world as an unsafe place. A place where danger lurks at every morsel or drink you put into your mouth. It is a place where we always know where the closest bathroom is and can get there quickly in an emergency. It makes leaving your house feel like Russian roulette – never knowing when desperate need for a bathroom with take over.

Anyway, that is what I’m feeling today. I’ll find a new drug to research tomorrow. Also, tomorrow, lets talk about a few of the clinical trials going on and how you can help!!!

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