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Diagnosed with Celiac Disease

  • Kiy
  • Aug 26, 2019
  • 6 min read

Updated: Oct 28, 2019

This past spring, life threw a curve ball at me. I didn't see it coming, though I had many warning signs over the past several years. I tend to ignore things and plow forward through this thing called Mom Life. I feel I was doing a pretty good job of plowing through it all, until this year. I slowly got to the point where I just could't do what I once could, not even a small portion of it. Last fall I, on a few occasions, blacked out. Once out in the yard with Sam, it was a nice experience, laying out in the dirt with grass in my hair hoping the neighbors don't see. On our anniversary, Sam and I had dinner out, and upon our leaving the restaurant I lost all feeling in my feet and fell forward into him. He caught me and I embarrassingly lay in an empty booth, having a panic attack, until the feeling came back and we could leave. That was in October of 2018. Fast forward a bit into January. I had a tooth break and went to the dentist to have it repaired. For the next 3 days I had severe vertigo. I remember waking up the second morning, opening my eyes and the room still spinning as I lay there. I decided I was going to get up and be able to walk straight because I knew what was going on and I could prepare myself for it. I stood up and started walking and rammed right into the wall. The vertigo did not last but a few days and I was back to plowing through life. I will admit as the next few months went on I faked feeling good. I faked it real good. I found myself so exhausted by the time I hit the pillow at night that I think I fell asleep before my head actually hit it. Spring soon arrived, as well as the onset of extreme fatigue and often fainting spells. Sam called and got me an appointment. I don't think he could let me go on any longer like this. If it had been up to me, I would not have called to see a doctor until I got to the point where I could no longer walk, but that's me, ha. The soonest they could get me in was Sept. 24, as we were trying to get in to see a new doctor. A few weeks passed and it was Mother's Day. I went down to see my mom. About halfway home my hands and feet started falling asleep. Then I couldn't feel the steering wheel. I would drive with my left hand while shaking my right then switch hands and do the same. Back and forth the next 45 mins. On top of that I felt exhausted. That week I began passing out more often. Sam called and got a sooner appointment. They decided to do extensive blood work and said they'd let me know the results in a few weeks. During those few weeks I got to the point where I could not drive. At first I would get lost, forget how to get somewhere I had gone many times. Then I would have a panic attack. One day I drove on and on, like in a trance, when I finally realized it, I was miles past where I was going. I soon lost almost all feeling in my hands and some in my feet. I could not hold my phone, a book, I had lost the ability to grip. If I dropped something it would take two or three times of trying to pick it back up before I could get a grasp on it, and I dropped things often. My back hurt, some days it felt like it was on fire. My wrist hurt, my legs hurt, I ached worse than having the flu. I had extreme vertigo, my world was spinning even with my eyes closed, which caused me to be nauseous. I could rarely get up with out almost passing out. I had learned that if I just fell down real fast I wouldn't black out. But I would get so close to blacking out I would start panicking. I hated the feeling of having no control of what was going on inside of me.


"I've faked feeling good for so long, I was just at the point where I could no longer fake it."

We pulled a mattress into the living room. I stayed there. I remember laying there watching Sam and the kids around the table eating dinner one night and tears filled my eyes as I thought of their future without me. I was sad for them, not for me. I really thought I only had a few days left and I hated it for my family. They didn't look right without me.

My girls helped their dad keep things up, dishes, laundry, etc. Asa was gone most of the summer. I am so thankful for all the opportunities he had.


Then the doctor called.

"You tested across the board, off the charts for Celiac Disease, "

she told me.


She told me to not eat gluten and that she would squeeze me in soon to go over the rest of the bloodwork. During that week I researched everything I could and thought "this is going to be easy". I wanted to feel better and if diet is all there is to it, I'm in!


Little did I know it was going to be way harder than that.


My bloodwork showed that I was extremely low in Vit D, Vit B and many more things. Mind you, I feel I'm a pretty healthy eater. But Celiac Disease causes your body to not be able to absorb vitamins, thus vitamin deficiency is most common among those who suffer from it. They taught Sam how to give me injections to help get the vitamins in me quicker. He is my super hero. If it were not for him, I would not be as well as I am now. (I still have a long ways to go, but I am thankful I'm not where I was. Praise the Lord.) It took at least 40 minutes for me to allow him to give me that first shot. Every time he came to me with that needle I would panic and say wait, wait just a min, I need a little more time, ha.

Eleven weeks of shots and lots of vitamins and prayer has gotten me on my feet. I even have a day or two every now and then that I almost feel normal. It always comes back to remind me though. Somedays I sleep a lot. Just can't get it together. I still have numbness in my hands and back pain. I rarely feel faint though, and that is huge. No more panic attacks. Praying my Lord will restore my strength, energy and feeling in my hands. I've recently gone to no grains at all, and no sugar. Just meat, veges and fruit. Hoping after a few weeks I will see some change.

Through it all I've learned to trust in Jesus more. I am a control freak. I'm learning to let go and let God. I can't control everything. I know God's got this. I'm in His hands and this is part of His will for my life. However He chooses to use this for His glory is up to Him. I've had to remind myself over and over to "keep finding JOY in the Journey". I'm blessed. I have an amazing husband, he's been so patient and loving to me though all of this. I have the most precious kids, that are learning to help me more and more. (Kylie Joy has been through a hard time herself. But she continues to help her mama.) My mom and dad are here at the drop of a hat when needed (Like when taking Kylie to the ER a few weeks ago). My sis has been on the other end of the phone answering my millions of questions as she has been with Celiac for over 9 years now. (She suffers the more common stomach issues, where it has affected me neurologically.) I have church family and friends who have been so kind to me. When I couldn't get up, many meals were brought to us. I have been given lots of cookbooks for Celiac and several books to read to better my knowledge of this disease. I'm so thankful for how far the Lord has brought me thus far. I'm looking forward to fall! Hoping I will get to eat pumpkin pie! ( I heard there is gluten free pie crust! If there is, I will find it!)


All I can say at this point is God is good all the time!


...there is no God like thee, in heaven above, or on earth beneath, who keepest covenant and mercy with thy servants that walk before thee with all their heart: 1 Kings 8:23


Keep on chuggin' on....


xoxo


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