Monday, February 1, 2016

...And What It Led To

Celiac disease is the body's inability to break down and process gluten.  It is not a food allergy.  It is genetic - meaning you are born with it - but it doesn't exhibit itself until it is triggered.  It can be triggered by a variety of things, and once it is triggered it is irreversible.  With a gluten free diet, it can be managed and damage can be reversed, but it requires very strict adherence to a gluten free diet.  It is not something you can "catch".  It can cause immediate and severe symptoms, which can be quite painful and debilitating, but the real damage is what happens to your body's digestive system when you eat food with gluten in it.  With prolonged exposure, it can actually stop your body from being able to absorb any nutrients from your food, which leads to malnutrition and even possibly death.  You can literally starve to death, even though you are eating normal and "healthy" meals because your body isn't absorbing anything from them.

These are all the things I learned from my GI specialist as he was telling me how important it would be to stick to a gluten free diet.  There were times as I was thinking about it that my mind would just shut down as I was thinking about how huge of a change this was going to be.  I had watched my sisters go through it.  I had watched them check ingredients on every item they ate, google everything, and bring their own food to family functions.  I knew that they had limited places they could eat, and they had to plan ahead for everything.  My mind would spin as I thought about everything that I had to do.

We decided to start with what we knew.  We went through our entire house, and purged everything that had gluten in it.  I searched for recipes that were naturally gluten free that were easy and quick enough that I could make them after work, or throw them in a crockpot.  We brought breakfast and lunch to work because we had no idea what to do when it came to eating out.  I was isolated.  I was scared.  I had no idea what to do and the idea of branching out scared me to death.  And I came from a family who had plenty of experience.  I had support.  I had options.  I can't even imagine going through this with absolutely no knowledge of it.

Things got easier.  We went grocery shopping and found some great options that made it possible for us to eat the food that we were used to.  We went out to dinner with my sisters and they showed us what to look out for and what places would be careful and understanding.  We fell in to a routine, and had options and learned what was ok and what wasn't.  We are still learning new and delicious places that are gluten free, and finding ways to satisfy our cravings for foods that we can no longer eat.

There were hurdles.  Our first trip out of town scared the heck out of me.  I had no idea if there would be places we could eat, or what to do if I got gluten and had a reaction.  I packed enough food for us to eat the whole time we were there so we wouldn't have to rely on being able to find food.  I remember thinking that I had no symptoms before I got sick, so my reactions wouldn't be that bad and I wouldn't get sick.  I didn't realize that the longer your body goes without gluten and the more it heals, the more it effects you when you get gluten and the more crappy you feel.  I learned how to tell early on if food had gluten in it, and to stop eating so the reactions wouldn't be as severe.

As long as I stuck to my diet, I was amazed at how much better I felt.  I learned that even though I thought I wasn't having symptoms, I was.  They had come on so slowly and were so "normal" for me, that I didn't even realize they were there.  The feeling of not being able to focus on anything and feeling so spacey I couldn't get anything done - brain fog is a symptom.  Being tired and bloated after going out for pasta for lunch - symptom.  Horrible cramps in the middle of the night after eating chinese food for dinner - symptom.  Aching joints and muscles for absolutely no reason and not wanting to move because everything hurts - symptom.  About two days after starting to eat gluten free, I was AMAZED at the changes I was seeing.  I think my coworkers got sick of hearing about how much of a difference I was seeing.  I was sure that it was all in my head, and I was just convincing myself I felt better.  Then I got gluten on accident for lunch one day.  All of my symptoms came back.  My body felt horrible.  My head was pounding, my stomach hurt, my joints hurt, I couldn't focus, and all I wanted to do was lay down and go to sleep.

I am still learning.  I'm getting better at checking things.  There have been many more exposures, and I learn new things every time.  We have found restaurants that are our favorites.  I no longer feel like everyone is staring at me when I ask for a gluten free menu.  The first few times I felt ashamed and embarrassed, like they all thought I was just trying to be "trendy" and follow the latest fad.  I am feeling better every day.  I hadn't realized how much it was taking out of me before, and I love feeling my body return to what it should feel like.  I am not at all grateful for the diagnosis and knowing that I have to live this way forever, but I am extremely grateful that I was inspired to have my doctor run the test before I had severe enough symptoms that they were causing issues.  At least if nothing else, my life is never boring.

No comments: