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. 

The test results so far for me

I know you are all dying to know. lol  The Endoscopy went ok.   They found a hernia in my esophagus, that I have IBS,  the parts of my intestines and stomach that are paralyzed are not getting much blood, and they had to take extra biopsies.  Depending on what the emptying study shows more paralysis  is whether I will have an emergency appointment or he will fit me in to go over everything. His words not mine.  I have been vomiting and had a lot of pain since the Endoscopy which I never had before but other then that no worries. I have the test next Thursday so I guess sometime after that you will hear the rest of the results

The test go on and on

The new Gastro ordered a ton of blood test for my daughter. He has also requested that she be allergy tested for a few things and wants her to be tested for all the behavioral illnesses that are greatly affected by Gluten.  We have yet to see her main pediatric doctor to have anything setup other then the blood tests.

Blood tests results roll in daily.  I knew that the test might come back flagged and half of the first set did so she will be watched for a more serious illness. When the second set came back low I was appalled.  I had asked for her Vitamin D to be tested because a year and a half ago I was told it was low. She was already on vitamins, we played outside as much as possible for sun, and we even made smoothies to try to boost it along with her iron which also stays low. I was told by the old base they didn't know what to do and as always nothing was done.  I was just a mother with to much time on her hands as far as they were concerned.  Now all this time has gone by and I can only wonder what else has happened to her body due to lack of treatment?

The doctors here acknowledge that she has not had proper treatment and are now trying to make up for that.  While I appreciate that it seems that so much more could be going on inside that little body then I ever dreamed of.  

The new doctor

I have to sing the praises of Michael K Davis Jr, MD at Nemours Children's Clinic in Pensacola FL.  He has a great bedside manner and is wonderful with children (which helps seeing that he is a peds doctor).

He asked what was going on and what I wanted to accomplish from the appointment. I of course said a diagnosis. lol  I had her previous paper work sent over so he already knew what it said and he was honest with me. Right now they do not have any other test that will give us one. From all of the test he has, all of the information he has received from me he can try a few more things to rule out other things but no matter what she needs to stay Gluten free for the rest of her life period.  I walked away from the appointment glad that I was doing the right thing for my daughter and praying that the world as whole will come to learn more about this disease and all the ones related to it so that it might be easier for future generations.        

We are going to see a new Peds Gastroenterologist

The last time we saw one we had to travel out of town to see him. So we were allowed to have one visit with him prior to the biopsy and then the biopsy.  The diagnosis left a lot to be desired.  After all the time that has passed and all the things I have had to learn on my own I am going in prepared (or as prepared as I can think up).

I won't lie and say I don't hope that he says oh there was some mix up in the tests and she really has this.  All she has to do is take a pill and she will be fine from now on.  Back in reality I know that when she comes in any contact with gluten there is no hiding the fact it changes her.  I am still hopeful and nervous all at once.

Wish me luck!

My search for the lactose intolerance and celiac answer and a bit extra

*** Note as with all medical information I share on here please ask your doctor.  I am a mom and do not know you.  Your doctor knows all your medical history and will know how any information will pertain to you*****

My daughter has lactose intolerance and I have been looking around to see if there is any possibility that she will grow out of it since it can come with the celiac disease or if she will continue to have it forever.  I am happy to say all the research that I have read has lead me to believe that there is a chance that after being on a strict GF diet for a year to two years she could grow out of it.  There is no clear answer but I did not expect one.  She could have the LI from the damage done to the villi and micro villi in her small intestines.  Once they heal (in a year -2 years) she can be retested and might be able to handle the process of breaking down lactose once more.  She might have inherited the genetic  problem to develop a shortage of Lactase from us.  

I thought anyone with CD or loved someone with CD would be glad to hear that there is hope.  Also if you have CD and have never been tested you may want to consider it.


I went to the doctor the for the "results"   So now my daughter and I both have appointments for  gastroenterology.  I also have a few other appointments I will keep you posted on.


I can't wait to get my hands on these!  I want to let my daughter try it for cereal but I also want to try making "rice crispy treats"  out of them.  I can't wait to see her face when she tries one for the first time.