Celiac is such a strange little disease. You can go stretches where you feel totally fine and you find yourself thinking that you’ve got it all figured out. You’re like “Finally!”
But then you get hit by god knows what and you become a prime candidate for the “Miserable A**hole of the Month” Club.
It’s celiac disease’s way of saying “Hey…I’m still here…and I always will be.”
It’s pretty simple…we can never let our guard down….ever. And even when we don’t let our guard down, we can still get hit with “that feeling”. Sure there are worse things in life, but still not an easy thing to live with.
I was reminded of the frustrations of living with celiac disease recently by the following three examples.
Example #1: I’ve been feeling great for the past month or so. No stomach issues. In and out of the bathroom without getting through War & Peace (twice). No brain fog. No irritability. Just…normal (if I remember correctly what normal actually means.) But Tuesday, out of nowhere, my stomach was “off” and last night I had the alien popping out of my stomach pain. And today? Well, we’ll see.
Example #2: I received an email from a teenager with celiac who is really, really struggling. She says:
Sometimes (every day) I feel I wanna give up, I wanna die, but I still have a little hope! It’s like I wanna die but I actually don’t wanna die. I don’t know how to express it. I hate eating and cooking, I hate everything!! I don’t wanna worry about food anymore.
I got glutened this week, after I saw a little improvement. I ate a cookie. I know I shouldn’t have eaten that cookie!! But I felt tempted and very, very, very sad that day. I feel very very bad now. I’m sick of being sick!! I wanna heal, I lost a lot of weight. Everything’s a disaster. I need help.
How many of these types of comments have I posted over the years? Why is it that our disease simply does not get the respect that it deserves? Argh!!!!
I responded to the above person as follows:
Try your best to be as patient as humanly possible. It can take much longer than one month before your body starts to heal and you begin to feel better. If I can recommend something…try to eat very, very healthy for a few months to give your body the best chance to heal. East mostly whole foods (meat, fish, veggies, fruit) and stay away from the processed gluten free food (what I call “replacement foods”) at least for a little while.
Don’t beat yourself up over the cookie. It happened. Move forward (but please don’t do it again). The sooner you can accept you’re gluten free for life, the sooner you will begin to mentally move forward.
Keep the faith. You will heal. You will get your life back. I promise.
Example #3: I wrote a blog post some time ago titled “I Don’t Want Celiac Disease Anymore“. It must not have been one of my better celiac days. Anyway, someone left the following comment on that post:
Normally I’m quite positive and optimistic that I can do this and fight anything that comes my way. But right now I feel broken and defeated. I really did not ask to have celiac disease and I’m doing my best to deal with it. But I’m starting to think my best isn’t good enough…When I start feeling normal and healthy something always comes up and knocks me back down.
It’s a vicious cycle with no rule book!
Ain’t that the truth.