Thursday, June 16, 2016

Celiac Disease

3 years ago I was diagnosed with celiac disease.  The sad part is,  I am pretty sure I have had it most of my life.  I have had a stomach ache for as long as I can remember.  I have alway had trouble in the bathroom - if you know what I mean.  My stomach has been like a hot air balloon.  Constantly full of air and constantly in pain.   Looking back now,  I am pretty sure that was the first of my problems and the Hashimoto's disease that I was diagnosed with 12 years earlier, came after.  All autoimmune disease begins in the gut.   And my gut was a big hot mess for a long time.

My celiac disease diagnosis has been a blessing and a curse.  A blessing because I am finally out of pain and I feel so much better.  A curse because it is hard to make sure no gluten enters your body - NOT EVER!!  I pretty much avoid going out to eat any more.  Most people view the whole gluten free thing as a fad diet and I have had people roll their eyes at me a time or two as I ordered my food.  Once a manager of a Rubio's practically yelled at me and told me everything on the menu was gluten free.  (It's totally not by the way).    Gluten is everywhere and it's quite a chore to avoid it.  I can't eat something if it even touches gluten.  It's that serious.  Even most shampoos have gluten in them.  While gluten doesn't go through the skin,  it does get in your mouth when you wash your hair.  

When I do get gluten in my system,  my small intestine gets attacked.  If you wonder why people with celiacs are so annoying with the whole diet thing, you can learn more here.   Not only do I struggle with anemia, and a damaged small intestine makes that worse, but my joints will ache.  I get anxiety.  My scalp develops a rash, I experience significant hair loss, and of course,  my stomach hurts.  Sounds like fun, right?   Not worth just one bite of that donut or pizza... trust me. 

One of the most difficult parts of eating very carefully now, is that I like to bake.  I like to decorate cakes and cookies.  I love all breads and baked goods.  Dang.  Even more than actually eating them myself, I really just liked to make yummy things for people I love.  Friends and family.  It has been a really difficult journey mentally as I have so many emotions attached to food.  Cinnamon rolls on a rainy day, the smell of the pies at Thanksgiving.  Hot rolls at Easter.  And traveling and eating out were so much fun.  I really enjoyed trying new things.  Trying the best thing on the menu.  When in Hawaii, I heard about a passionfruit donut, and of course I had to partake.  And it was pretty dang good too.

I have leaned so much over the last few years.  I learned about the need to heal my gut.  I learned that going gluten free wasn't enough to really feel better.  I will save that for another post.   But I have had to learn a new normal.  Holidays need to be enjoyed and celebrated in new ways.  Instead of focussing on the yummy pies,  I have had to learn to focus on family, and friendships.  Slowing  down and enjoying whats around me.   I have had to learn to serve my family in different ways.  I can still make yummy food, but now the focus is on nutrient density, instead of sugary sweet.  I am learning to respect food and my body in a whole new way.  

I am growing.  I am leaning.  I am changing.  I like to think that this journey of life is helping me be a better person.  While I resist change, I know change is not bad.  It teaches me compassion and in so many ways, helps me connect with other people.   

Life is good.  Even without the gluten.


Amy from Our Dish said...

I'm sorry that you have this mountain to climb, but I SO admire your attitude. I can somewhat (in my own, different way) relate. Food is highly wrapped up into our emotions, traditions, holidays, socializing, EVERYTHING. At first when something disrupts our ability to participate normally, it feels like torture. I need to learn from these great things you said!

...and now I'm wondering how much shampoo I eat!?!?

AliceK[i]ND said...

Wow Melissa! I can't even imagine how difficult that must be. I learned a lot from this and I now have a greater respect for the disease.... and you! You are an amazing example. :)