I was hesitant sharing this because I never want to break others hope, but even four years into living with Celiac Disease, it hasn’t got much easier.
There are still many more harder days than good. My health is still commonly subpar and doctors still don’t have many answers beyond, “You have Celiac Disease”. Knowing that CD can have hundreds of symptoms tied to it, and I went far too long undiagnosed, I’m sick of feeling like I am unable. During the month of May, I walked over 50kms for Celiac Awareness. That felt amazing, but a health decline happened very shortly after and walking has become difficult again ever since. There are days, a cane is wanted but do I really need it? Is the pain that debilitating? Is it in my head like others say?
Celiac Disease likes to play games with my brain too. Being that I have long-term epilepsy, I’ve always had brain problems, but things are different. Foggy days are common. Emotions are more balanced thanks to medications, but sadness sits heavy. Depressive episodes can last weeks. Happiness can be felt in the morning and disappear come evening, with no change between the two times. Moments where reaction should be, yet there is none. Doctor just ups the meds any time I express concerns, and that shuts me down internally.
Most don’t know about the darkness I live with. I have always been very private about my mental health and what it really is like living in my head. I am not one to go through with the act of self-harm, but if I was to die tomorrow, I would be okay with that. My partner has heard me vocalize this, my doctor too. Sadly, I think many of us with Celiac Disease can feel this at some point. Living like this, living gluten free is HARD.
Eating has become a little less stressful. Our arsenal of gluten free dinners has expanded a lot with my attempts at eating better, trying new Celiac safe meals and recipes. This isn’t to say that it is always easy though.
Our doctor would classify us as having a severe eating disorder, if he knew one meal was commonly the only thing ate in a day. A fear of food developed after many sick nights from eating trusted foods. It can sometimes be easier to just not eat than risk having a bad day, when you need it to be good. I know, talk to him. The shame I’ve felt over the years speaking with him is what always keeps me away. Canadian health care, is not the greatest. Don’t worry. Our coming reflection will ease your souls on something I deeply know needs help.