What's wrong with JackJack?

Last Wednesday, we took our sweet baby boy to our Pediatrician because he had a nasty rash on his behind....he had blistering on his yingyang too...it was just to the point where Aquaphor wasn't making it better.

As I was talking with our Doctor, I mentioned that the reason I think he gets this rash (which he gets often) was because he has such loose stool, ALWAYS.  He is 15 months old and has never had a solid BM.

I also mentioned that I was hoping for an Allergist referral because I feel he has allergies to milk and recently he has pretty much stopped eating.  ( He tosses everything on the floor, purses his lips and screams if he's in his high chair)....so he's essentially been living on Rice Milk - which is another adjustment I had made to his diet because when he was on Soy formula or then Soy milk, once he turned 1, his stools are not only loose, but grey.

Our Doctor put him on the scale to see how his growth was, and much to my surprise, he had also lost 3 pounds since his 1 year appointment (a little over 2 months ago),

So, instead of Allergist, he referred us to a GI Specialist at Riley Children's Hospital North.  (What was THAT appointment going to be like?  WHAT IS WRONG WITH JACKSON'S GI!?)

Well, when this Friday came (his appointment was set for 1pm), I woke up with a headache...which worsened to a full out Migraine by 12 noon.  I was anxious, I was fearful, I was having flashbacks to wrapping up our just over 1 year old like a tortilla for a CatScan of his skull while he screamed (Joey)...and the sunny day and a tired, crying, frustrated baby boy didn't help my head at all.

I broke.

I took the medicine (which I had to make a special trip back home for), I texted my friends to pray, and I sat in my mini van in my driveway and sobbed....I was in so much pain. (AND WHAT IS WRONG WITH OUR BABY BOY?)

Joe met me at the hospital and helped me with Jackjack while I filled out paperwork...Jackson knew something wasn't right, he sensed fear, and so he thought he'd help by crying, writhing out of our arms and being inconsolable....(HEAD HURTS...bright lights....loud crying...God help me, please.)

We get to our observation room and wait.  Joe does his best to entertain Jackson while I continue to fill out more paperwork.

The doctor comes in.  He is kind.  He is concerned.  He asks questions...
Did you bring the label of the Rice Dream?  (No, was I supposed to?)
Have you ever done a stool sample with him?  (No, was I supposed to?)
Have you ever heard of Celiacs Disease? (Disease?, WHAT?, No.)

Joe had to leave to go pick up Morgan and Joey (MY usual routine for Friday afternoons).  The doctor left at the same time to make some copies for me....Jackson continued to cry...writhe....be inconsolable (I am such a crappy mother!  Why can't I get him to relax?...HEAD HURTS....)

The Doctor comes back in with 2 pieces of paper.  They are food labels.
Rice Milk vs. Whole Milk.
Long story short - Rice Milk is sugar water and I have been starving my child. It has no fat, which is essential to brain development, and little protein, which is essential to nutrient absorbtion. (If you ask Joe, or anyone else, they will comfort me and defend my decision and encourage me that I was doing what I thought was best for my child) (I am such a crappy mother!)

He is thinking there is a chance Jackson has Celiacs Disease (a gluten intolerance).  So, he had arranged for blood to be drawn following this appointment downstairs in the "Lab" area of IU North Hospital.  (Why not?  My son is already a complete wreck, what's a stick in the arm going to do, make him cry MORE?....HEAD HURTS....)

He wants to meet us again in 3 weeks to see how things have progressed....

The blood draw was actually not too bad.  Jackson FINALLY took the bottle after his bandaid was put on and he quieted right down.  We were given some samples of Pedialite Kids, and other soy-based protein type shakes to give him the fat and protein he'd been missing.  (Stupid Rice Milk)

My migraine NEVER went away that day.  I could take a max of 4 pills in 24 hours and that day, I did.

Jackson immediately started to have better skin in his diaper area, but the dream of him sleeping through the night because his belly was so FULL from the protein shakes is still a dream....actually the 2nd night after the visit was the worst night he has ever had for fussyness, screaming, and pretty much required constant rubbing of his back or he would cry.  He barely slept.  I barely slept.
I am spent.

I am anxious.

What if he has this disease?
What if it's more?

I'd like to say that God has moved in amazing ways in all this....that I have turned to Him and trusted...
Instead,
I have relied on friends to do the praying for me.
I have relied on my husband to hold me and listen and see my tears. (well, some of them)

I am exhausted.

I don't know what's next. 

We have already decided to try to go Gluten Free as a family for a while, (except bread for packed lunches for the other 3).  Why not, right?

I am calling our pediatrician for a referral for an Allergist tomorrow. 
I have got to get to the bottom of this...What is wrong with JackJack?

I have no choice, I HAVE to Trust.  I want to Trust. God help our baby boy.