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Gluten Free Girl

GlutenFreeGirlsMom

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GlutenFreeGirlsMom Newbie
GlutenFreeGirlsMom
Posted

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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notme Experienced
notme
Posted

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  :(

cyclinglady Grand Master
cyclinglady
Posted

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.

  • 2 weeks later...
LittleMama Newbie
LittleMama
Posted

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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    • jenniber
      Disaccharide deficient, confusing biopsy results, no blood test

      By jenniber · Posted

      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
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    • SamAlvi
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