Celiac disease, it’s a peculiar little beast. There are those stretches where you feel like you’ve cracked the code, sailing through life thinking, “Finally!”
Then out of the blue, bam! You’re hit with something, heaven knows what, and suddenly you’re a prime candidate for the “Miserable A**hole of the Month” Club.
It’s celiac’s way of reminding you, “Hey, I’m still here, and I’m not going anywhere.”
It’s a simple truth—we can never let our guard down, not even for a moment. And even when we’re vigilant, we can still get blindsided by “that feeling.” Sure, there are greater challenges in life, but living with celiac disease is no walk in the park.
I was recently reminded of the frustrations that come with celiac disease through two particular examples.
Example #1: For the past month, I’ve been feeling fantastic. No stomach issues, smooth bathroom trips—not akin to reading “War & Peace” twice, mind you—no brain fog, no irritability. Just… normal (if I even remember what normal truly means). But then Tuesday rolls around, and out of nowhere, my stomach starts acting up. Last night felt like an alien was about to burst out of my gut. And today? Well, who knows?
Example #2: I received an email from a struggling teenager with celiac disease, and her words hit home. She writes:
“I’m 17 years old. I started the gluten free diet last month and still can’t see any improvements. I’m going nuts!! I’m really really stressed. I don’t know how to calm down. I hate this disease. I don’t have anybody’s support; this is a very lonely disease!! My mother just gives me the money to buy my food. I keep everything separated but I feel so lonely. I feel nobody takes me seriously!! And there is gluten all around the house, everywhere!! They don’t respect me; I’m so angry!!
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.”