Thursday, December 29, 2011

My Story

It all started on Thanksgiving Day 2011. 
This is the day that set forth events that changed my life
as well as the life of my family for ever.

We traveled to Virginia to be with my family for the Thanksgiving holiday and my cousin from Ocala, Florida also made the trip.
It was Thanksgiving Day that my Dad, myself and my little one Anna met up with my cousin and her husbands family for a rather chilly and breezy climb to the top of 
Rocky Knob, Virginia.

Anna is the little one on the far left and I'm in the red sweatshirt on the right standing next to my cousin Tracy :). Even as I stood here I had so many questions running through my mind.
This is where a conversation began between myself and my cousin
{whom had been diagnosed with Celiac Disease a year and a half earlier}
that really sparked a lot of my interest and left me asking more and more

I was shocked that a lot of the things I had gone to the doctor for and had received no relief or even help with were the same things she had suffered from as well. 

So when the visit was over and we headed back to Orlando
I hit the ground running and immediately made appointments for both my children and my myself.

I was especially concerned since my youngest has been having seizures and we have yet to find the reason behind them and in reading about Celiac Disease learned that seizures are a symptom.

And after picking my jaw up off the floor having read about seizures I then read that ADD was also another symptom. And my oldest daughter had just been diagnosed with this and placed on Vyvance!

After reading this I knew I had to get answers. 


to discuss Celiac Disease
{Primary Care Provider}

I had a quick discussion with my doctor and she quickly recommended we do an 
endoscopy to test for Celiac.
[from here on out I will refer to Celiac Disease as CD]
I was really shocked that we would make a huge leap like that to test for this when my cousin had told me simple blood tests along with a saliva test could reveal it.
So I asked about the blood tests and saliva tests and my doctor was honest with me and told me that she had never heard of these tests and that
she has always just sent her patients to a Gastrointestinal specialist for testing
"It's the Gold Standard Test"
she told me. 

But I pressed for answers and she left to consult with her colleagues and returned to tell me there are blood tests we could do and she would order them. 
If I wanted a cheap and easy way to know if I have CD to...
Go Gluten Free for Two Weeks then eat a Whole Wheat Sandwich.
What? Are you kidding me??

I have to tell you I was stunned at the lack of knowledge about this disease.
I simply took the lab order and left. 

When I shared the lab order with my cousin she shared it with her doctor and he immediately told me not to have the ordered tests done. 
That it would be a waste of time and would not reveal 
if I had CD or not.

This is when my cousin suggested I come see her doctor.

Another life changing event for me.


The Consultation
{First Meeting with a Knowledgeable Celiac Doctor}

I wasn't nervous. 
I actually had been to so many doctors that this was routine. 

What I wasn't prepared to hear is..


After years of feeling "not right" and "not like myself" and suffering from so many different aches and pains, fatigue not to mention walking around in a brain fog state all the time, I was elated that I had finally found a doctor that understood.

The next step was testing me for Gluten Sensitivity and Celiac Disease.
I am so hopeful that the testing we are doing reveals what is going on with

I spent a total of 2 hours talking with this doctor and every time he asked me a question about how I feel or have felt or things that are bothering me he always understood and I knew immediately this wasn't the first time he had heard these words uttered.

For years I have felt like a 

And that's exactly what a lot of doctors think of patients like myself
but that's because they are untrained and want to get people in and out as quick as possible and with a pill. 

{I like to call this}

Fortunately, I left his office that day knowing I had symptoms and wasn't crazy.
There is nothing sweeter than validation!
Finally knowing there really is something medically wrong with you and that you aren't nuts is a

So I walked out knowing what I needed to do
 and from that day forward I made a decision to follow his directions and remove
gluten from my diet.


My Symptoms

Is that so much to ask for?

I just want to be able to focus and not feel like I am in a daze. I want to be able to think again and not feel like I am struggling to carry on a conversation. Frustration for me is wishing so badly to be able to speak and communicate but not being able to because my mind simply will not work.  These are just a few of the many many things that I am experiencing now.  I'm tired of slow thinking, or feeling like my mind is fuzzy, less sharp and floating in a foggy maze amongst all these sharp witted people who seem to have life under control.

Don't even try to teach me something new I will not get it at all at this point. I struggle enough trying to do the things I have done for years. Simple things. Tasks that I should be able to do without even thinking have become laborious at least.  And I along with my family have made excuses for the way that I have felt over the years.

It must be stress. I didn't sleep good last night. I need something to eat to help me think. 

And it's so sad to think that the same food I love to put into my mouth may be the one thing making me sick!

Could it be??

For example, Why am I forgetting how to spell??!! For gods sake I should know how to spell 
But here I sit writing a grocery list and can not for the life of me even remember how to spell this most simplistic word. Would make you feel crazy, right? Well it sure made me feel stupid, crazy, old and just down right useless.
I kept telling myself it must be due to over use of spell check. Yeah, I use spell check way to much and look at what it's doing to me. It's making me forget the basic skills I learned in elementary school. Shame on me. I need to try harder at spelling and use spell check less.
focus Focus FOCUS

Could it be??


I arrive at work and stare at the computer with a list of work I know I need to do and have no understanding of where to start or how to even get the ball rolling or what to do to get the job done. How sad. Once again I must be stupid I've been doing this for a long time. 
Why can't I walk in here and do my job?

Could it be??


I have no energy. I have had days where I just lay on the couch all day. You know
"Riding the Couch".
Why don't I have energy to do the things I want to do?
I used to work out, felt great about myself and was in the best of health and at an ideal weight. 
Now I can not loose weight no matter how hard I try. And energy for the gym? Forget it!!

Could it be??


I feel so sad and depressed and much of the time walk with a heavy heart. Darn it. I want to be happy too! Is that so much to ask??

Could it be??

For a good year or more my fingers have been aching so bad at times that I have to run them under hot water just to get my fingers to feel flexible again. I asked..Could I be experiencing arthritis this early. My primary care doctor replied "Yes you could." and that was all she would elaborate on the subject. No, "Lets find out whats going on with you." Basically, she politely answered my question and wanted to get me in and out in less than 30 minutes. 
We are talking health care here..NOT PIZZA DELIVERY !!! 
Yet I have never had a doctor in my life want to spend more than 15 -20 minutes with me and at the end of the appointment there was either a referral to one of their "friends" or a prescription was shoved in my hand along with a pat on the back and off I went.  No doubt a pill that one of their pharmaceutical reps gave them to push in return for some nice perks.

Could it be??

I've noticed for years that my skin was aging much faster than my friends or family and have always wondered what is wrong with me. There has to be something wrong. I drink lots of water. I use the best lotions but nothing seems to help my skin retain its suppleness. I've wondered if I was getting to much sun so I got a face cream that has SPF 30 to apply before my makeup and have been using it for years. All these efforts have always left me with the same extra dry skin that I could visibly see aging incredibly fast right before my own eyes.

Could it be??


I've never liked how I look in pictures. Those dark circles under my eyes never go away. No matter how much concealer I use or how I lean my head for photos you can still see those horrible dark circles. What the heck is the problem here? Why did I get blessed with dark circles under my eyes and these lovely wrinkles? Is this some cruel joke?  UG!

Could it be??
{Not to mention dry eye and dry mouth}  

If I hear the doctor preach to me one more time about my HIGH CHOLESTEROL I'm going to scream. The last time I had it checked it was 235 and she was really pushing the cholesterol pill. 
I refused. I can bring this down on my own I thought. But the low energy made it near impossible to make it to the gym.  So my cholesterol remains HIGH to this day. 
{Ill update you on my cholesterol levels when I get my latest blood work back.}

Could it be??

Okay I know I'm clumsy but I had no idea I was this klutzy. Where are all of these bruises coming from? Some I can account for but others I have not a clue as to how they got there and I am shocked beyond all when I spot a new one.
I even bruised my hand and thumb pretty bad just from clapping. 

Hmmm. I've never been anemic but what's causing this.

Could it be??


Why in the world do I sometimes  have to rush home after eating at a restaurant only to bolt to the bathroom? I mean come on. This doesn't happen every time we eat out but when it does it sure is annoying. 
Why can't I plan dinner and a movie with my shweetie like other couples?

Could it be??

My scalp sometimes becomes itchy in spots and I've always wondered what in the world causes this to happen to me sporadically. It's not like dandruff more like eczema. It doesn't go on all the time but when it flares up its very uncomfortable. So when it happens I am off to the store to buy some T-Gel to help cool my sensitive scalp. I still to this day ponder what is causes it. Shampoo maybe? Stress? 
Gosh I dunno.

Could it be??


My little one has suffered several seizures and after many hours of reading, hospital visits and lots of crying and confusion we still have no answers as to why she is having them. But after talking to my doctor I have discovered that Celiac Disease is hereditary and it can rear is ugly head in the form of seizures.  How sad is this? My doctor has instructed that we run the tests on myself and see if i have the genetic code for Celiac then move forward with testing the girls.  What ever my results are. My children will be tested for this. I have to know.
So with all that being said.

Could it be??


I have suffered with night terrors since I was a teen. Not a fun thing at ALL.
{If you don't know what a night terror is read this. }
They are no fun for the dreamer nor for the person trying to calm and comfort.
I had no idea that there were causes for this because everything you read states they more often occur in children and they normally outgrow them. Which has always really made me wonder why me? Why am I still having these when everyone else seems to outgrow them after entering adult hood?

Could it be??


I was amazed at all the symptoms I had after leaving his office
shockingly every problem I have listed above is a sign of
Gluten Intolerance and Celiac Disease 
and I haven't listed all my symptoms.
As a matter of fact there are approximately 300+ different symptoms.
I know I was complaining about the symptoms I have but I really have to be thankful that I don't have more.

Following the my doctors advice I have gone on a gluten free diet and after just three days I've noticed a huge difference in the way I feel both physically and emotionally.

I kept a log of each day and how I felt so I could look back and see
how I was feeling and what changes were happening and

Read below to see my day-by-day changes.


My First 14 Gluten Free Days

Consultation Day
Just left the doctors and I really feel hopeful that we know what is going on with me. I am going to follow the doctors orders and remove Gluten from my body.

I am just being mindful of what I put in my mouth. Right now I don't have a ton of things I can cook with so I am sticking with fresh veggies lean meats.
Now off to make dinner! :)


Day One
I have some energy today. Less brain fog. Actually feeling sharp thinking today. Amazing could this really be working??


Day Two
I am now on day two of no gluten and I am having some strange things happen. 
For example I do have more energy but I keep getting a ringing in my ears and have long moments of dizziness. I can only equate it to the lack of gluten my body is getting. I'm hoping my withdrawal doesn't become more pronounced in other areas like muscle cramps, twitching and head aches.
Otherwise feeling great.

Day Three
More energy and still feeling great. Woke this morning and went for a run. First time in a long time I've actually had the energy and felt like I could go out and run. I was able to do two miles (walk and run).  That's further than I've gone in years. But the shocking part was how I was able to actually breath.

[What are you kidding me??]

No Inhaler needed!!!!

I've always had exercise induced asthma.
This was the first time I've ran and felt amazing and could actually breath freely.
I can not tell you how excited I am.

Turns out
You can't run with a bread stick stuck in the tail pipe! 

[I had this thought run through my mind while running and I about died laughing.]
I'm sure passersby thought I was nuts.
But really I was just a little less glutenized!

Oh Life is Good!


Day Four
Ran again today. Amazed at how strong I feel. 

Still feeling amazing. Having emotional break downs of crying but they are tears of joy. I haven't felt this good in YEARS! Still learning a lot. Just bought Gluten Free Living for Dummies as I am trying to read and learn as much as possible so help ease my transition into this lifestyle.


Day Five
Feeling on top of the world today. Clear headed. I can actually think. It's no longer hard for me to speak. I no longer feel like a lazy communicator. I'm not using "thing" for every by-word.

I did notice something very wild tonight after poker. I was resting my chin on my hand, you know the old prop-the-head-up-I'm-bored stance, and I noticed my neck isn't swollen like it used to be. I have always asked doctors why my neck, just on either side where my lymph nodes live, is so swollen and fat looking. They've always told me, That's just how you are made. or You just carry more fatty deposits in that area. and the often repeated Those are your lymph nodes. 
Ok and on occasion I would ask if they were swollen only to hear it's probably because of
(whatever I was in the doctors to be seen about)

So I've always thought maybe this is just how I am made. Maybe I will just always carry more weight in my neck. After all I do have an enlarged Thyroid gland.
But it appears NOT! My neck is noticeably decreased in size so much in fact my husband saw it too.

Laid down to go to bed tonight and for the longest time I have thought we needed a new mattress. It just felt so hard and I had the worst time falling asleep due to my achy body.
Last night I went to roll over and was actually wincing in anticipation of pain and then quickly realized...

No Pain!

I began to cry. This is truly amazing. Here I lay in the bed feeling light as a feather and the mattress is so soft and comfortable.
At this point I'm in shock over how much pain I have been in over the years.
[I had just started to live with the pain and really didn't realize how much pain I was actually in]

My neck and shoulders are very sensitive and achy right now and I am having a few muscle cramps now and then. But I can deal with these tiny aches because I know they are only the withdrawal of bad stuff leaving my body and will soon be gone!

I also have felt more relaxed today than I knew possible with out pain meds. LOL
Seriously I've never felt this relaxed without some type of narcotic.
And I have to tell you it feels even better since it's


Day Six
One week of no Gluten. Woke feeling refreshed energized and decided to go for a run. My run was awesome. Feeling even stronger on my legs. My lungs don't give out and my legs feel strong the whole way. I never feel like anyone is holding me back. All I feel is a sense that I can run faster, longer and stronger than I ever have.

What an Amazing FEELING!!!

My run time was faster and I find myself wanting to continue running when I'm supposed to do my walk intervals.
{To explain the walk interval. I'm on a walk / run training program to get me back to running}

I do feel amazing. I'm noticing my appetite has decreased a lot. I was eating a ton before. I imagine my body was trying to get nutrients. I will find out soon enough if how depleted my body is.
Should be interesting.

Achy neck and shoulders has driven me to try a massage to relieve the pain. Had an hour massage tonight to work on those areas. It really seemed to help a lot. So glad I did it.
Shouldn't be too long before these aches and pains go bye bye.

Super thirsty for water all the time too.
[worried that I could be diabetic]


Day Seven
Tomorrow will be exactly one week!!!

Feeling awesome. My skin is looking very pink and healthy. My neck swelling has gone down even more. I look bright out of my eyes. And I am so happy that I could just scream!!!
I continue to feel incredibly calm, relaxed with a let's-not-get-excited spirit.

{That is, unless the situation is a let's-not-get-excited situation. Otherwise lets get the party started!}

Situations that used to get me upset at the drop of a hat are now just silly incidences. "Let me help you." and "Let's get that fixed" situations. They are no longer the huge life shattering problems as perceived in the past and have now been reduced to life's little hick-ups.

My concentration is so improved. I can actually do my job.
And I'm finding that I'm as patient as the day is long.

There used to be a time when my little one would ask me often
"Mommy are you happy?"
I would always stop and reply
"Yes, I'm very happy why do you ask that?"
She would always come back with
"Because you have a sad face."

Sad thing is I really wasn't happy. I was sad, in pain and had no idea why
and every doctor I went to honestly didn't have an answer.

Guess what?
Anna hasn't asked me that question this week. ;)

Health and Happiness go hand in hand.
Health and Happiness go hand in hand.
Health and Happiness go hand in hand.
[I can not stress this enough!] 


Day Eight
This day started off great. I went for a run and made incredible improvements in my run time and distance!!
Feeling great all day until lunch time. I had some brown rice with stir fried veggies and used my new GF Teriaky sauce. Something bothered me really bad. I became very tired and my stomach felt raw. I had to lay down I felt so bad.

I called Great Value brands to see if the Brown Rice they sell is processed in a wheat, barley and rye free environment. Turns out it is. So I called my cousin, who has CD, and she told me that some rice company's put a protective coating on the rice that has wheat in it and to use
Mahatma Rice that they do not coat their rice.
[nice to know but wish I hadn't ate it. UG!]

I know that rice has always left me feeling like this but I always thought it was the outer husk on the rice and my tummy was working extra hard to break it down.

After eating this same dish minus the rice I am noticing the same feeling in my tummy.
So now I am wondering if its not a combination of multiple foods I have introduced.
I had bell peppers stirred into my vegetable medley. {Nighshades}
I also used the Gluten Teryaki Sauce {Includes Soy}

So now we need to try and find the culprit.
[Culprit found. Canola Oil messes with me and just so happens it messes with many CD patients. Out with Canola only Olive Oil here now.]

Turns out
The road to Recovery is also a road of Discovery


Day Nine
Feeling better today. Want to go for a run. I will eat nothing today with those items that caused me problems yesterday.
Actually not feeling like putting anything much in my mouth today.

Feeling a tad weak on my run but was able to make it. But this isn't how I want to exercise. I want to feel energized. I will take tomorrow off unless I feel fantastic and cant contain my energy. LOL
Never thought I would say those words.

I had a clementine when I got home and that seems to have helped my upset stomach. I have no idea why it seems to calm my stomach upset. Anyhow going to push through this and have a good day today.

Just talked to Tracy and I mentioned canola oil that I used to cook my veggies with and she said only use olive oil.  Canola oil makes her sick as well as a ton of the folks who attend her Celiac support group.
So out with the Canola oil here!
[I know I mentioned that earlier but just wanted to make sure you heard me. ha!]

Took me all day to start feeling half way decent again. I was finally able to feel relaxed enough to lay down and know I would fall asleep with no problems. Went to sleep still not feeling as good as I have in the past week. But happy to know it will pass.


Day Ten
Woke feeling so much better today. I'm not going to run today and give my legs a rest especially after riding the couch for most of the day yesterday.

You know I am so thankful that I finally found out that Gluten has been my problem for most of my life. Just knowing I'm not crazy is a gift in itself. :) LOL

Validation is freeing!


Day Eleven
Woke feeling pretty darn good. Slept great.
Today is a busy day going to the Farmers Market then back home to get last minute foodie items together.

Day Twelve
Christmas Day
Today was an amazing day for me and my family. I can honestly say I have never been so at ease, relaxed and comfortable in my own skin. Enjoying life is so easy now that I don't have my body fighting against itself.
I have struggled for control over my hands for a while now. I thought I had just gotten to to lazy to write pretty and then when I really tried to write nice it still came out horrible. It was like my hand wanted to move to fast and just made a huge mess of things. I then thought well..I guess Ive been in a hurry for so long that my hand writing will never be the same.
I was wrong. I now can take my time and write really pretty again.
Pretty Penmanship is back.
Yeah baby!!!!

I actually looked forward to spending time with the family this year and drank ever last drop of the time up with them. It was truly magical.

My sister-in-laws were amazed and mentioned I was like a new person and they both could not believe my skin and how I have a glow now. My sister-in-law even said I look 10 years younger and mentioned she always felt like I was very tense and uptight whenever the family came together.
She is right.
Not the real me and thank God I have found my true self again.
She was so inspired that she is going to try going Gluten Free and I of course offered to help her in any way I can.

If I can help anyone who is suffering like I was and lend them a hand in finding their way back to the world of the living I will do so.

Just like my Angel Cousin Tracy always says
"Just paying it forward"
{love you Tracy!}
and for that
I will be forever


Day Thirteen
I woke feeling great and went for a run. Feeling stronger everyday.
I still feel like I need some vitamins since I am not that hungry but I will wait and see what the doctor prescribes for me based on my blood work.

[I don't want to put anything in my mouth that could have a wheat coating on it.]


Day Fourteen
Runs are getting easier and are actually fun for me now.
Nice quiet time for me to think and really work on

Felt great today and made
Pasta Fagioli Soup
[minus the pasta]
even though I have GF pasta here
this soup is just to die for even without it.


Thank you God for steering me in the right direction to meet and talk with the people I needed to which ultimately lead me to this peaceful place.

Like Momma Barbie always says



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