5 year old, tested negative, responding well to diet

[Annajoy7]

Hello all,

My son started having stomach pain/diarrhea back in the fall. Often he would not make it to the bathroom. (The kid has never had a normal bm, but it had gotten much worse).

In January we tried cutting dairy. My husband is lactose intolerant. That took care of the diarrhea but not the stomach pain. 

He has gradually dropped percentiles since his 1st birthday from 40th to 9th for height.

His doctor told me anxiety/some kids just have stomach pain. 

In the last couple months his pain seemed to get worse (we just had a baby, we were eating a lot more processed food because it was easier).

I requested my son be tested for celiac a month or so ago. The blood test came back negative. His doctor recommended a trial diet (cutting gluten and casein). Since we have cut oats as well (they also seem to cause pain)

The difference in my son is amazing. It is like I have a different kid. He isn’t melting down over little things, he puts his cloths/shoes on correctly, pedaling his bike is now easier, and he started pumping while swinging. He has grown a half inch in the last month. He is eating double what he used to.  Just today he said, “Remember when my stomach used to hurt really bad.”

 I know that the “gold standard” for diagnosis is biopsy. I’m just not sure I want to put him through that, especially since it might not show anything.

Is positive response to diet enough? Seeing how well he is doing. I am thinking of asking for the genetic testing at his next visit.

Our whole family has been feeling better eating this way. Even my newborn had his reflux go away.

I guess I am just looking to hear other people’s experiences with their kids as far as celiac or non-celiac gluten sensitivity.

 

 

[cyclinglady]

It sounds like you are on the right path.  Talk to your doctor about your son’s health improvement.  I like your idea of getting the genetic test too.  That, along with the improvements on the gluten-free diet, should help get a diagnosis which can be useful once he goes to school.  

[frieze]

frankly, i think he is too young to put through the re exposure.  if the testing had been done properly in the first place... but he can not really understand why you would be causing him pain.  and he needs to make up the lost growth.  try to get a thorough genetic testing, not JUST for the 2 genes recognized in the USA.