Before we begin, we feel it is important to state that this post is entirely personal based and should at no point be used for medical recommendations/suggestions. Thank you for reading <3
How has it been a full four years since I heard the words, “You have Celiac Disease.” October 21, 2017 was the day this journey began, and it still feels like just yesterday it did.
In our year 3 diagnosis anniversary update, our post spoke more on the various ongoing health issues we experience, and the goals of the coming year ahead. This year, is a year for reflection. A reflection on the ongoing struggles living with a disease, and the reality of how Celiac Disease has changed who we are.
Have you ever stood in a room full of people and felt like no one knew you were even there? That is what this past year has felt like living with Celiac Disease.
Alone. Alienated. The forgotten.
Days and weeks, sometimes months can go by without a single text, phone call or social engagement from anyone but our MeeMa or co-workers. Many gatherings have happened, but Celiac Disease is always the underlying reason for my family being the forgotten ones. It weighs on me, knowing my disease is the cause of us always being alone.
Funny thing is, I am the prepared Celiac. I take no risks. If I’m not doing the cooking, I’ve ate or brought my own food. I never put the responsibilities of my disease on others. I know how terrible people feel if I become sick because of food they’ve provided me. Emotionally, I can’t do that to others.
My parents and father in law, they are the only people I trust to feed me outside of my home, and that won’t change any time soon.
Celiac Disease has felt extremely alienating this past year. Friendships have become acquaintances, celebrations have become new plants, hang outs with friends have become late nights with YouTube.
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.
Did you know undiagnosed Celiac Disease can lead to potential complications with child bearing/female reproduction? It came as a surprise to me to learn I would never be able to have any more children. To know my body could not and will not carry a human being ever again, hit deep. Previously, I had options. Now though, the options are limited to external sources only.
My uterus is dying, it is 10x normal size due to uterine fibroid degeneration, and when time permits, it would be in my best interest to have it removed. My ovarian complications have lessened and cancerous cells are no longer a concern, because they’re polyps. The pain will forever be with me, until everything is removed. Even then, there is no guarantees I will have full mobility again, as nerve damage has been done in my pelvic and lower back. Inflammation, who knew it could wreak such havoc.
Saying farewell to womanhood hasn’t been an easy pill to swallow. I am not even in my 40s yet. I thought I had a least 10 more years before menopause would be on the horizon. A hysterectomy at my age, could ignite it. I am lost, and not making any decisions until I truly have too. Right now, I wait and hope a few more dietary changes can prevent a major surgery for a few more years.
There are days it needs to be screamed louder than loud.
Celiac Disease will NEVER defeat us.
It can’t. This is a disease. It doesn’t create who I am. It doesn’t own me. This year, I am determined to live for everyday, doing things I love, even if I have to do it alone. Taking time to take care of me is so important. Valuing the body I have and giving it everything it needs, to be the best it can be, is so important.
Bad days are forever going to be apart of my life. That doesn’t mean I have to stop living because it is a bad bones day. (had to)
The first step to improving our life is developing better eating habits. It is taking time, but having breakfast, lunch and dinner everyday is the goal.
Some days a breakfast and dinner happen, and it is celebrated. Other days all three planned meals happen and it isn’t even noticed until the late hours of the night, and I celebrate quietly alone in my head.
Living with Celiac Disease is forever a journey, but it will never defeat us. This year is a year FOUR reflection and making the changes I need to live as my best self.
The reflection the personal few need.
When living with Celiac Disease, you are going to need continued support and aid through your journey. It has taken me YEARS to figure this out. It has taken a lot of time to see the ways I break my self growth, the ways I punish myself for things out of my control. Living with Celiac Disease is not a punishment, and it doesn’t need to feel like it anymore.
I have to stop hiding the reality of my disease from those in my life. I didn’t choose to live the way I have too. Yes, it sometimes feels like I am THAT person in the group. It is going to happen, but I know I need to stick by living gluten free everyday. Others just have to tolerate it for a few minutes.
I can’t and won’t give up. Every day is a new day, with Celiac Disease.
I hope when I return with my year 5 update, it is full of many happy moments, and over the next year my growth continues to improve the happenings behind the scenes at Gluten Free Journey.
The easiest way to commit to improving my eating habits, is documenting everything. As I improve developing weekly gluten free meal plans, they will become something I share with the community hiding behind our website.
I thank all of you for continuing to read and joining on our journey through Celiac Disease.
Love and appreciate each & every one of you <3