Celiac Disease and Being Alone

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Here is the truth: celiac disease can be a very lonely disease.

Not many people have it (one in 100 people) and stories of its apparent absurdity travel around the public like a bad rumour. What isn’t a rumour is how lonely one person can feel when THEY ARE THE ONLY ONE DIAGNOSED WITH IT WITHIN ANY GIVEN STRETCH OF LAND/COUNTY/CITY. Some of those diagnosed keep to them selves. Some of those diagnosed might to be worried to be truthful about their disease and therefore never get to meet others with the same feeling of loneliness. Having a disease like celiac and being the only one with it indoor family can make for some trying times.

Hell. Even if you’re they only one, defending yourself without backup is terrible.

There is nothing wrong with feeling alone when you’re diagnosed with celiac. But, know that there is support out there and people out there and organizations out there that have it and deal with it and can help you get through ANY troubling times you might be having.

I’m one of the lucky ones. I consider myself lucky because am a diagnosed celiac, I have nothing against this disease. I’m lucky because I have backup, backup in the form of my mother who is also diagnosed with it. She has been diagnosed as long I as I have. Her and I talk about it, compare notes. Argue about it. Having a celiac partner makes things a lot easier.

It truly is grand to have my mother diagnosed with celiac, because I count on her and trust her and have mega-support from her all the time.

I was hoping to do that with my young nephew.

There was a time, when my nephew, at four years old was put on a gluten-free diet and, as bad as it sounds, I was excited that he was. For my own selfish reasons, I wanted to be his cool older uncle who Had to eat gluten-free food with him at family functions and when we traveled in and around the province.In my own selfish ways, I was happy he had to eat gluten-free, NOT diagnosed with celiac disease, but on the same diet I was on, and placed on it via  medical professional.

Then he got tested for celiac disease.

Then it was found out he no longer needed to be on a gluten-free diet.

Then I felt like I was alone again.

Yes, as I said, my mother also has celiac disease (because its a hereditary disease) but our connection together as kin and medically diagnosed was different from a small child. I was heart broken when I found out my nephew didn’t have celiac and could go on eating gluten-full food as he grew in a strong, independent and well rounded person. I thought maybe  I was going to have another male in the same boat as me, but, his journey was meant be different from mine. And I can’t be more happy and excited for him. I just thought, I had these notions that him and I would go on this journey together; eating gluten-free and talking about our lives with this restriction.

Not anymore. I felt alone.

Maybe I’m just jealous.

Maybe my selfishness is in fact a misplaced jealously of a small boy who doesn’t have to explain why he eats different and doesn’t have to worry about food at parties and functions in the public. However his life goes, I’ll still love him.

Celiac disease is a lonely disease when the wrong people are by your side. Or NOT at your side. To find those with celiac, don’t hide it. Yell it from the roof top. Tell the world.

Celiac disease doesn’t have to be lonely.

I Wish You Had Celiac Disease

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Celiac disease is hereditary.

My daughter has been tested for celiac disease and has been deemed negative.

Being diagnosed with celiac disease isn’t a death sentence. Getting my daughter checked for celiac is a smart move. Catching it early to prevent any problems that could potentially arise in the future. Celiac is hereditary, so having immediate family checked should be on the list of things to do this week.

My mom is a diagnosed celiac. When I was initially diagnosed at 27 years old, i let my mom know about the hereditary nature of the disease and she got checked.

Being the ONLY gluten-free eater in a house of five; there can sometimes be a feeling of being a lone or left out. Many times are family meals are gluten-free, sometimes we might even make gluten-full food and gluten-free food. Then, on days when I’m not a round or out of the house, caution goes out the window and it’s gluten for everyone: ordering take out Chinese food or breaded chicken wings. There is no handbook on how to feel when you have celiac disease, knowing that people can just do what they want with the food in the house can sometimes make you feel like a burden. This is a legitimate feeling that you are allowed to have.

Would you wish celiac disease on someone?

I would. Only to have a buddy.

I wish my wife had celiac disease.

She has stood by me the entire time I have been diagnosed with celiac disease. And even as I travel the world of my current celiac status, she is there with me. Always supporting me and making sure I am looked after. But, the things is, my wife can only empathize with me, she can’t feel what I’m feeling when I sit at a table and everyone gets a grandiose meal and I sit by and have a salad. In moments like that you feel like a complete outsider, and to have my wife experience the same thing could make me sit at ease.

I only wish my wife had celiac, not to have to go through the range of emotions one person might feel, but for selfish reasons: to have a buddy. Someone who lives with me and thinks of food the same way as me and can relate to some of the problems or negatives a diagnosed celiac might have to go through. There aren’t always negatives with celiac disease, more often than not there are amazing wins, and I’d want my wife to know that feeling too. Even is she decided to go gluten-free as an act of faith an solidarity, that personal move still isn’t the same as being diagnosed with an disease like celiac; where the only treatment is a 100% gluten-free diet. It’s not a choice.

It’s just that; celiac disease can really put you down in the dumps sometimes, and having someone go through the same thing in the same house would be an amazing bonus. Kind of like having a support group, right there with me. There is no shame in hoping, or wishing someone had celiac with you. YOU ARE ALLOWED to feel like this. Being alone is a terrible thing, and celiac disease can make you feel alone, even when in a crowded room. Having someone you love and respect by your side makes handling situations like that a lot easier.

I wish my wife had celiac disease only for selfish reasons, but I love that she doesn’t.