Crazy pre diagnoses story.....
Daughter started having severe Celiac symptoms when she started "solids". She was having symptoms on breastmilk too. I removed gluten from the family diet because docors kept blowing off concerns and didn't do any testing. (over 10 years ago ~ but I still hear doctors are blowing off testing for that "fad diet"). Improvement! Asked for testing to be done with new information of gluten free diet helping the situation.
Put everyone but myself back on gluten. (I was too sick immediately after eating and had to take care of 2 kids.) My daughter was sick, sick, sick, again. She had her Celiac panel drawn and the day after the 2 week gluten challenge she was hospitalized for 4 days for dehydration from "D" and vomitting. Started gluten free diet in hospital. She was labeled as too ill for the endoscope with biopsy and the genetic testing was done. She tested positive for both DQ2 and DQ8. She was diagnosed as "probable" Celiac. She was pur strictly on a gluten free diet at 16 months old. Life was pretty good.
Then everything really hit the fan. She just turned 6 and all Celiac symptoms returned, but much worse. She was vomitting up to 5 times a day. I could not find any "hidden" gluten or cross contamination in the house. Back to the ped. GI for an endoscopy with biopsy. She was diagnosed with Eosinophilic Esophagitus. EE is now known to have a connection to Celiac and all new cases of EE should have an automatic screening for Celiac.
The really hard question that will never be solved, Did she have EE from the start? Could we have avoided the once a year (on average) hospitalization for dehydration if she had been fully diagnosed with BOTH Celiac and EE?
From my experience, I suggest you get a FULL and ACCURATE diagnoses. It sounds like the ped. is not helping you get the diagnoses, so you need a refferal to a ped. gastro.
A short list of related disorders for gut pain/ "D"/ vomitting/ malnutrition in ped patients
Celiac/gluten intolerance/ DH* DH would have a noticeable bilateral rash
congenital defect of GI track
Eosinophilic Gastro Track disorder/ EGID
(that's a short list off the top of my head from memory of pre EE dignoses 5 years ago.)