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Gluten Free Girl


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#1 GlutenFreeGirlsMom

 
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Posted 21 April 2014 - 12:30 PM

Hello!

 

I am a mom to a little girl that I believe is gluten intolerant. She has had the blood tests done  - negative for Celiac, but positive for the genes. with *Very High* results for possibly developing Celiac. She is 6 years old. When she does gets Gluten,  We can tell because of headaches, and joint pain. She has been on a Gluten Free diet for over a year.  Before the diet, she was very ill. Chronic constipation, and failure to thrive.  I have had her to 2 specialist in our area. A pediatric GI doctor from St. Christopher's Hospital in Philadelphia, as well as Children's hospital of Philadelphia to see a pediatric Urologist. She is still a bed wetter, and will also have bouts with Encopresis.  I am at a loss to help her.  I am wondering if there are other parents that have been through what we have. Every time  we see a doctor, they give me a script for Miralax, and it is frustrating to say the least. I am wondering if there are any parents that may be able to give me some direction. Thank you for listening. :mellow:

 

Jennifer from PA


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#2 notme!

 
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Posted 21 April 2014 - 02:07 PM

currently, there are no tests for gluten intolerance.  if she has been tested (and had been eating gluten the whole time before testing) but she is better off the gluten, (and you said she is genetically predisposed) if it was my kid, i would let them do any other tests necessary to rule out other things.  then, if she is better without it, keep her gluten free.  you don't want to miss something else, but at the same time, if you can tell she is better and growing as she should, that's what i would do.  good luck and i hope you get it figured out  :(


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arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

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have a nice day :)

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#3 cyclinglady

 
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Posted 21 April 2014 - 02:48 PM

I would not worry about the bed wetting. Both my parents were bed wetters, one of their kids ( they considered themselves lucky), and two out of their five grandkids. They all out grew it by age 12. Thank goodness for the invention of pull-ups! I am the one with celiac and I was not a bed wetter, so I do not think it is related.

I can not comment about the encopresis but maybe it is like the bed wetting situation and she will out grow it. Some kids will only "go" in perfect conditions, like only in their own bathroom and no where else.

I hope you find your answers.
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#4 LittleMama

 
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Posted 04 May 2014 - 06:00 PM

Hello!

 

I am a mom to a little girl that I believe is gluten intolerant. She has had the blood tests done  - negative for Celiac, but positive for the genes. with *Very High* results for possibly developing Celiac. She is 6 years old. When she does gets Gluten,  We can tell because of headaches, and joint pain. She has been on a Gluten Free diet for over a year.  Before the diet, she was very ill. Chronic constipation, and failure to thrive.  I have had her to 2 specialist in our area. A pediatric GI doctor from St. Christopher's Hospital in Philadelphia, as well as Children's hospital of Philadelphia to see a pediatric Urologist. She is still a bed wetter, and will also have bouts with Encopresis.  I am at a loss to help her.  I am wondering if there are other parents that have been through what we have. Every time  we see a doctor, they give me a script for Miralax, and it is frustrating to say the least. I am wondering if there are any parents that may be able to give me some direction. Thank you for listening. :mellow:

 

Jennifer from PA

My younger son is being scoped at CHOP tomorrow. Sounds a lot like both my boys. If my little one is positive, we are having my older one tested. My little one tested positive for the gene and has IgA deficiency and they lost the IgG tests.... long story.


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