My Celiac Story – Part 2: Day-to-Day with Celiac Disease

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“It’s not so bad.”

That’s what I tell people now. NOW it really isn’t. Because I remember how awful I felt before knowing what was wrong with me, and how much better I felt after changing my lifestyle to accommodate this disease.

On a daily basis, these are the things that someone with Celiac Disease must keep in mind:

1. Stay away from sickness at all costs!

Because Celiac Disease is an autoimmune disorder, the common cold easily turns into bronchitis or pneumonia. The normal stomach bug can last for weeks at a time. And anything more than “the norm” could literally be deadly. Immune systems with Celiac’s must be treated very gingerly.

2. Stress will always make things worse!

It doesn’t matter if a person with Celiac Disease has been following a good diet and staying away from illnesses – if stress is a major factor in their life, it will not bode well for their health. This is true for almost anyone, but especially someone with this disease. It can cripple much easier than one would assume, so it’s important to keep calm at all costs.

3. Diet is paramount!

Celiac Disease is one of the few things that can be completely treated with diet. This is a blessing! Many people have to take medication every day for the rest of their lives to treat what ails them. In normal cases, as long as the gluten-free diet is followed, the health of those with this disease can remain sound.

As long as I follow the above guidelines, day-to-day life with Celiac’s really isn’t that bad! I think most people think it’s so difficult to follow a gluten-free diet, but it really isn’t that hard! All I have to do is think about how horrible I used to feel, and it makes eating right super easy! 

Now, there are days when I mess up. 

Sometimes I accidentally get a hold of some wheat gluten. Sometimes I let the stress get to me.  And some days I get too close to illness.

When I accidentally ingest wheat gluten, I know almost instantly. I don’t know of a way to describe it other than I get a very weird feeling at the back of my throat. Within about 30 minutes, I’m in pain, and it may end there, or it may make me sick for a few hours…or a few days…or a few weeks. Very unpredictable. 

When I have a stressful day in which I don’t keep myself calm, by the end of the day, I can definitely tell. My stomach winds up in knots, and you can bet your bottom dollar that I’ll be up with tremors, nausea and either vomiting or diarrhea in the wee hours of the morning. Sometimes I’ll be able to get a few hours of rest and continue on. I’ll be tired, but I can still manage. And some times the illness lasts longer, and I can’t do much of anything the next day. It just depends.

And when I get too close to illness, I’m normally down for the count for several weeks or even a month at a time. And since antibiotics mess with immune systems, they are one of the worse things for me. Sometimes it comes down to the fact that there are instances in which you have to feel worse first in order to feel better later. 

So that’s the normal day-to-day for me. Is it different for you? I’d love to hear what your experience has been!

And as a little inclusion to this post, the following is a piece of creative writing that I penned when I was in the midst of an attack. It’s pretty raw. It’ll give you just a glimpse into what goes through my body and my head.

Blessings in the Night

It’s dark. Darkness I normally find comforting. Soft. Enveloping my body and my dreams, lifting my unconsciousness into another existence. But not tonight. Why does this always happen in the night?

No matter how I breathe, or lay, or try to hold myself rigid, still I shake. This is what I fear. The uncontrollable tremors that seem to possess my body. I swing my arm hard and slap at the light on my alarm clock. 4:02am. I catch my breath and try to hold myself still as another flood of tremors wracks every inch of my otherwise still form. No use. Still they intensify, and I fight for breath. Please God, not again.  I can’t do this, I can’t go through this again. Tears roll down my cheeks, and I feel my head moving feverishly of its own accord. And still I shake.

My father’s form is outlined by the soft light creeping up the hallway from the living room. Kneeling by my bed, his hands hold my legs, trying to keep them still, trying to make the shaking stop. His head is lowered, and his mouth moves. I hear a slight choke in his voice, and I know he’s praying. He hates to see me like this, I know. But he can’t make it stop.

The waves are coming now. Not the waves of sleep that I long to give in to. No. These are the waves of nausea, exhaustion and despair. I know that it won’t be long now until the pain will start, and I will have no choice but to resign myself. I soon will not be able to fight it anymore.

Giving in with a slight sob, I allow the trembling to overtake me. My father’s grip tightens, and I can hear his prayers now. He seems so far away.

The fear begins to creep in. The fear of out of control situations, of pain, illness, failure.  And the darkness seems to grow stronger.  The night that has always been my friend seems to be turning on me in a cruel way.

Pain.  More than I have ever felt before.  I grip my sheets in an effort to brace myself against it. No respite. God, why? I really can’t handle this now, You have to stop it!

A melody enters my head. Faintly at first, yet growing stronger.  I turn to try and regain comfort. No use. The melody seems louder, and I force myself to remember the words.  Even as the pain increases, and I begin to cry softly, the words appear.

I’m so secure
You’re here with me
You stay the same

Your love remains
Here in my heart

So close, I believe
You’re holding me now
In Your Hands, I belong
You’ll never let me go

Yet still the pain seems to worsen. It seems too much to bear. I twist and turn, trying to move in any way that will bring even a slight interval to the horrible sensations.   

Finally I can do no more.  The despair takes over, and I sob uncontrollably. What? What have I done?  I don’t understand why this is happening again.  What is the purpose of this illness that takes control of my body when I least expect it? Why?

A hand.  I feel a hand in the middle of my agony.  I try to open my eyes to see what my father is doing. He’s gone.

Confusion sets in. I try to grasp the hand with my own. 

I can’t feel it with my fingers… I can only feel it with my pain.

It’s large. Larger than I can describe, yet it seems to fit perfectly over, under and all around my anguish. Warm and gentle. And the pain. The pain seems to lessen suddenly. My breath comes easier, and again I search for the source of the warmth on my body. Still there, I can feel the outline of this hand. The pain still there as well, yet its tone is ever so slightly softer. Just enough so I can handle the ache.

A very sudden and clear realization of the presence of Jesus fills my heart. The melody plays back over and over in my head. “You’re here with me…I believe…You’re holding me now…in Your hands I belong… You’ll never let me go.”  

Now I recognize the Hand. I close my eyes and savor the Touch.  The darkness in the room seems to dissipate, and I feel His presence like I never have before. My cries have been heard.  The pain is not gone, but it is lessened enough so I can bear it.  The waves are still washing over me, but there is peace in my mind and a melody in my heart.

The night once again seems comforting.  The promise of day invokes hope.  The journey is not over,  I  know, and  I  will endure  many  nights like  this one,  I am  sure.    

Yet, through the wakefulness, He brings rest. Through the uncontrollable, He brings peace. Through the pain, He brings relief. And once again I know: there are blessings in the night.

Psalm 42:8
“…and in the night, His song shall be with me…”

CLICK HERE TO GO TO MY MAIN CELIAC PAGE FOR ENCOURAGEMENT, RESOURCES AND RECIPES!

Due to the amount of comments from all of my wonderful readers, it is not always possible for me to respond to each one. However, I absolutely do read them all, and if you’d like to address something specific, or have a question for me, please don’t hesitate to email me at Kristen@theroadtodomestication.com. I will respond to your email as soon as possible! Thank you for visiting the blog!

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