The Professional Patient

What a novel idea. The doctor was facing me, and going over everything – right. on. the. screen.

That’s what I feel like.

Each month, the tally on how many doctors I’ve been to – seems to rise.

I can hardly believe we are in the last quarter of the year. In less than 2 months, we’ll be ringing in a new year… and I still am struggling to be heathy for Him on a daily basis.

For me, 2012 means… a year of searching why my body was breaking down, and then…after repeated mistakes, and lack of listening… me, realizing that gluten was my number one problem… and coming to terms with that, for myself… and genetically – for our family.

But while things greatly improved in regards to bloating and gut pain… there were more symptoms, and issues that came on – especially if I was accidentally glutenated, as I was in August, and again in September…

I’ve been told I must be “super” sensitive to gluten… because my reactions have been insane with trace amounts.

I’ve embraced the possibility of having asthma, and multiple food allergies… only to discover last week. I have neither.

“Then, what is it?” I wondered… “What could else is going on?”

Why am I so tired, all of the time.

Why do I hurt, and swell?

Why can’t I sleep at night, and why do I wake up with night sweats if (according to blood work) I’m not in menopause?

If my thyroid is fine, and my adrenals are ok… and my cbc says I don’t have cancer… what is going on?

Because I KNOW this is not in my head.

I knew I struggled with breathing, and it’s been getting worse and worse. I’m no longer able to workout more than 15 minutes without having to bring my breathing and heart rate back down, before starting again… and sometimes it’s so draining, and disappointing to this type A girl.

And then…

I met my endocrinologist, Dr. E.

I experienced something I’ve yet to experience.

She listened and understood.

She was the first Dr. to actually want to look over and review the sheet of things I typed up to go over with her. It included most of my past year. Tests I had, lab work and symptoms…. everything up to ‘now’…

Interested, she asked if she could have a copy… in disbelief, I excitedly said…”Of course!”

“We’ll get to the bottom of this,” she reassured me.

I sighed a breath of relief thinking, she might actually know what she’s doing.

She didn’t hesitate writing celiac on my paperwork. She got it…. and after about 10 minutes, she returned with her plan of action.

WOW.

She has a plan and I didn’t have to defend myself of where I am with everything?

For me?

I was in shock.

“All of your symptoms, with celiac and uveitis… point to sarcoidosis,” Dr. E said.

I nodded, and listened…

“I need you to have a chest x-ray, blood work to check for some genetic markers, vitamin deficiencies and a bone scan. I also want you to see a uveitis specialist and I’d like to try a NON-addictive sleep-aid,” she said.

“OK…” I listened.

Sarcoidosis??

That sounded familiar. Maybe?

Ironically, {to me} I had first heard of it only a few weeks prior, as a friend of mine, has a friend struggling with a rare form of Sarcoidosis…as well as other auto immune diseases.

Seriously God? YOU know how to make sure I know YOU ARE watching over me!

Yes. He does.

I. AM NOT. ALONE.

So, 3 hours later, after I went down my laundry list of tests that day… I was excited.

So grateful.

I needed to learn about what having Sarcoidosis could even mean.

Is Sarcoidosis bad? How bad? Does it really match my symptoms?

So that’s what I’ve been doing… as I await my results.

I’ve been unearthing information about this strange named disease… and figuring out how to say it.

…and have been shocked at how much it would explain much of the unexplainable “whys” of my body for years.

Sarcoidosis, lovingly called “SARC” by many… is a systemic, chronic inflammation, with a genetic marker, and an environmental trigger, believed to be breathed in, or ingested. IT causes a hyper-immune response, which makes white blood cells form clusters, called grandulomas. These often cause permanent damage in many of your vital organs. The number one place it settles – is in your lungs, (sometimes) causing irreversible damage. It can settle in all of the major organs, including your heart, liver, kidneys and eyes, causing things like uveitis. It would explain my breast fibriods as well… why they were not drainable – but large, white masses of cells.

It’s common for people with undetected celiac to have sarcoidosis, as I’ve read some statistics up to 40% of celiac females having some type of sarc… and it’s also regional – with certain states seeing a lot more sarc. than others… including Iowa, Kansas, Michigan, some of the east and western coast states. It made us wonder if allergens and humidity played a role, with the genetics aspect.

There are good scenerios, and tragic ones too… depending on how long you’ve had it, and the extent of the damage – which is staged, according to your chest x-rays.

Since I’m not sure if I have it … I’ve tried to not let my mind go anywhere, but to the possibility of this could be the start of feeling better…

So I pray… as I await my results… and I welcome prayers and joyful thoughts that will keep me positive and smiling.

I don’t need solutions – just listeners, encouragement and love.

“See to it that no one takes you captive by philosophy and empty deceit,

according to human tradition,

according to the elemental spirits of the world,

and not according to Christ.”

Colossians 2:8

Posted on November 4, 2012, in Celiac/Gluten Sensitivity, Our Struggles, Truth and tagged , , , , . Bookmark the permalink. 4 Comments.

  1. So glad you found someone who listened and believed in you. I have just discovered Dr. Thomas O’Bryan who is doing a lot of work with gluten. His website is http://www.thedr.com. One of the things I heard from him was a story about a catholic nun who continued to have symptons after eliminating gluten from her diet and they finally figured out it was the host she was taking every day at mass.

  2. I’ve seen his page before. It’s refreshing when someone understands that gluten is bad for anyone who is sensitive to it – causing many other health and behavioral issues. I appreciate that about him. That’s interesting, although I know some churches offer a gluten free option too. Thanks for sharing!

  3. A doctor that listened! It’s a start! Praying for you daily! Love you

  4. Thank you Cindy! Love you!

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