Sunday, October 16, 2011

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. 

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