Fight for yourself

I started this blog to share our journey with you so that you could learn from my mistakes and also what I do right with my child and her gluten free diet.  After much thinking I am sharing my news with you so that hopefully it will save some of you and your intestines.

They now know I have Gluten sensitivity or celiac disease and they know I have had it since at least first grade.  When I was 16 I became very ill and went through a ton of test  finding out part of my stomach and  intestines were paralyzed.  When we asked why no one knew, no one cared. They tried me on the medication approved in the US.  When I could not take it I was told to learn to live with it and I adjusted my life around it.  

I recently went in for more testing and new studies to find out my intestines are getting very little blood now and  I get to try 2 different medicines  if the first one works great! the second is not approved in the US still after 14 years (not sure that the insurance will pay for it). If they don't work they want to put in a pace maker for my intestines and the last option is the dying portion will have to be removed.

I tell you my story because after fighting for my daughter to find out the why of everything I know how important it is.  The doctors should have found out why my intestines were becoming paralyzed 14 yrs ago.  If I had been on a gluten free diet for 14 or more years maybe my intestines would not be the way they are now who knows.  I do know I will never walk out of a doctors office thinking  "I don't know"  is an acceptable answer  and neither should you. 

Preparing for the biopsy....A look at how far we have come Day#4

We are on Day #4 Giving little bit some gluten each day until the biopsy on the December 8th. As all of you who have gone GF and had to go back please join me in stepping outside after this for a screaming session and GF drinks!!!!   Really though I knew Gluten did BAD things to my child and I know when she had it in her system even though we try our best to keep her in a GF environment.  I mean you can see it physically in her stomach but also all emotional changes.  Now on day 4 I sit here trying not to rip my hair out watching my child's regression in her behavior, speech, and well all of her functions. I am only on day 4 and emotionally overwhelmed.  I am shocked that I was so happy at all the positive the GF diet that I forgot all the horrible things that prolonged gluten caused her. I am exhausted from the chaos that is now my child's mood.  (ones of the sure sings she has had gluten though) I have whiplash at the speed in the breakdown of her speech, motor functions, and regression for her age.  


I look at her  behavior everyday saying this is not all her it is the gluten too.  I still make her do the things she was expected to do before.  She just spends much more time calming down in her room then before, being reminded to use her words, how to hold utensils, and now to go to the bathroom.  I go to bed each day thinking how did we live like this not knowing?  How did I have the patience to live like this all the time?    


Well this is just day #4 in our journey I am sure I will post more on this.  GL and Bless you all that are going through this right now or that are not yet diagnosed.  


Note: I have thanksgiving day pictures and info that I will share but not today