Living with the truth…. Celiac…. What?

Best and worst day of my life.

It’s not just a diagnosis, it’s a “life” change.

I can’t explain how hard it is to give up foods you love. Do you realize how many things are made with glutens? It’s insane. It’s in everything!

Unless you live alone, have plenty of money to de-glutenize your entire kitchen, and the entire family goes gluten free, you are constantly contaminating yourself. You are always in pain. Your gut controls your life.

Do you understand Celiac Disease?

Celiac is not curable. You can’t just stop eating gluten and poof, you’re cured. It’s not just “a watch what you eat” diet. If you are lucky to catch it at a young age you can help prevent other long term diseases, but you will always have the disease.

I was diagnosed at a later age, almost forty. There is damage that has been done that cannot be reversed. I live with that, do my best to be positive and allow my body to do what it can.

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So… I’m going to tell you a story about a girl….
This girl had dreams, big dreams. Those dreams disappeared slowly until the day they were no more. See this girl spent so much time in medical offices getting all the wrong diagnosis, trying to get better, only to get worse. She started to feel unbalanced.

Her hands would crap, and shake real bad. (She gave up painting)
Her feet continuously cramped. (She gave up running)
Her back would hurt so bad, she couldn’t stand. (She gave up sports)
She would go months with a headache. (She gave up going out with friends)
Her skin would be covered in these bumps, almost blisters, on her legs. (She stopped wearing shorts)
Her stomach would swell, and get rock hard. (She gave up getting dressed, stayed in pajamas)
Her hair was so dry, nothing helped. (She cut all her hair off)
Her skin was so dry it would crack. (She just cried)
Her teeth started rotting. (She stopped smiling)
She spent more time in the bathroom then she did outside. (She lost her friends)

Her immune system kept failing her. She was sick all the time.

She could no longer look in the mirror. She hated herself and her body. She became extremely sad. Tired of the pain, tired of the comments from others. Tired of living.

This girl spent too much time worrying about the pain, she forgot to live, she forgot her dreams.

Then one day she reconnected with an old friend, he made her feel alive. She felt healthier, and felt control come back into her life. She was happy. She was still in pain, but happy. He came with a beautiful little girl, she loved her like her own. Then they started a family, a miracle actually considering she couldn’t have them. They had two beautiful babies. She thought… “I can do this! I can live a normal life.” Then it came crashing down. The pain, the weakness, the no drive to do anything. So afraid she wouldn’t be good enough for them, So she pushed herself. She pushed and pushed, until she broke.

Back to more doctors, more specialists……

Then one day they figured it out! She wasn’t crazy, she wasn’t over dramatic, she wasn’t alone. For once someone cared enough to do the right tests, to find the right answers.

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So that’s where her story began… Starting over. 

Well my story, that’s where my story began.

I have good days, I have bad days. I have days that are so hard to even try to explain. I still suffer. I still cry everyday. I awake with a headache every morning. I still don’t like mirrors. My teeth are in bad shape, and it makes me not want to smile, that’s hard for me to not do. I’ve been gluten free for over a year and a half, though I do feel better my stomach still burns everyday, I am still contaminated daily for I have to cook for my family. I have extremely low if not null vitamin definacies – D, B, B12, iron, magnesium, potassium among others, not only from the Celiac also in thanks to a blood disease. I am often weak, or as some may say lazy. I can’t stand for long periods of time, my feet and mid back hurt and cramp. I can’t sit for long periods, my lower back spasms and sends electric shock up my spine to my brain and my feet fall asleep. Thank you Mr. Arty for that. I paint as often as I can, but with shaky hands I have had to relearn how to paint.

I get sick more than most. I am always cold, even when I’m hot. I am always hungry no matter how much I eat. Eating hurts. I am not healthy no matter how hard I try or what I do. I am constantly in pain. I’ve spent too much time in hospitals. I am often sad, and I hide. I have few friends that I rely on and trust. I don’t leave the house often, only when it is needed. I don’t give my children as much as I wish I could.  I feel sorry for myself.

Get over it! You aren’t the only person living this way!

And so my story continues……

I have so much in my life. I have a husband who I believe honestly loves me. I have crazy, out of control, loving, adorable children that keep me going. I’m still here, I’m still breathing. I do what I can when I can. I still push myself, sometimes to hard, but I have to. I don’t feel sorry for myself. I’m learning to “re-live”, live around my multiple challenges. I’m trying. I’m grateful for what I have, and those that will stay for the journey.

So my painting skills are off…. Hell I was never a Picasso.
So my teeth may fall out…. I’m sure there is a funny play out there with a hillbilly.
So long hair may not be my thing…. It’s OK, I look good in wigs.

It’s hard for people to understand what another is going through. Even people with the same disease are different. We all suffer in one way or another. It makes us who we are.

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