kvanrens1

Well, after having a discussion with her and her Dad, we (they) decided now was not the time to try eliminating all dairy. It probably is the culprit. We will restart the probiotics. We had her on them the first year of being gluten free. Compared to where we were, the gluten free diet has been nothing short of a miracle for her and us She says...

Thanks Stephanie. That is a very good suggestion. I think that is where we should go next but the girl LOVES cheese in any and all forms. She will not be very happy. I have also been wondering about the FODMAPS diet. I wonder if that would help her.

It has been a while since I posted. Our daughter is doing great on the gluten-free diet. We recently celebrated her two year anniversary of being gluten free. Just to catch you up on her history (sorry this is long). She was diagnosed as growth hormone deficient when she was around 7 years old. She was too underweight to start growth hormone treatment...

We don't drink sodas and rarely give her orange juice because of the acid reflux. She does not like spicy foods so that is not a culprit. I do feel it is probably another food intolerance. She eats lots of lactose free cheese - wonder if it could be casein? She could also eat her weight in fruit. Fructose could be another consideration. She has had...

Thanks everyone. I will try some of the suggestions.

Our NCGI daughter has been gluten free since March 2012. She is doing so well since going gluten-free. She has gained weight, no more painful stomach aches, she is growing, and most importantly she feel fantastic. She has been able to stop so many medications but we can't seem to get over the GERD/acid reflux that results in painful, loud burping. She...

Her stomach was still hurting this afternoon so it was probably gluten. Just disappointed for her because we are so limited in our small town that we usually take food for her when we eat out. We have a PF Chang's and Mellow Mushroom around an hour drive from us. She does fine at Mellow Mushroom so guess we will have to stick to Mellow Mushroom. Hate...

Her plates did not have tofu (soy) and she is not sensitive to soy that I am aware of. I requested gluten free soy sauce and like last time they brought it out separate, in its own container.

Yes, it was the same PF Chang's both times. I told the server that she had gotten sick the last time we ate there and he said his wife eats gluten free too. He was sure to point out the signature plates when he brought out the food. Just a puzzle because I know PF Chang's is one of the "good guys" that really try with the gluten-free preparation. I was...

My 9 year old NCGI daughter ate at PF Chang's in August 2012 for lunch. By that afternoon, she was so sick that she did not make it to the toilet on time. Very embarrassing for her. We have not been back until yesterday. She ordered the same thing as last time. gluten-free fried rice and gluten-free singapore noodles. She did not eat much of the noodles...

Just saw this on Yahoo - thought I would share. Great idea if your child is in the care of others. Open Original Shared Link Kristy (by the way, not endorsing in any way)

My daughter is one of those that is non celiac gluten senstivity. Her blood tests (incomplete panel several years ago and never retested), endoscopy, and genetic tests were all negative for celiac yet she was very, very ill and in near constant pain. She has been diagnosed with failure to thrive, pancreatic insufficiency (fat malabsorption), lactose intolerant...

We have had the gene testing for our daughter through Enterolab. It was helpful for us to know that she does not have the main celiac genes and fits with her negative celiac tests. Her official diagnosis is non celiac gluten intolerance. The test is a quick swab of the inside of the cheek and not invasive. Enterolab does not provide subunit info. ...

Wonderful news about the test results. My daughter grew around 4 inches on her first year of growth hormone injections and this was prior to going gluten free. Kristy

Agreed IrishHeart. Given how bad she felt and how her little body was reacting (pancreatic insufficiency is very rare in children; pain so debilitating that she would get disoriented), I just don't want to miss anything important in her follow up care. I no longer trust the docs to be experts and want to go in educated. If she needs a CBC and CMP, I want...