Hi @propitious You must be at your wit’s end with worry for your daughter! I’m sorry to hear she’s having such horrible stomach pains. Hopefully the hematologist is on the right track for giving her some normalcy in her life.

I’m not a medical professional and members in Connect aren’t able to diagnose or offer treatment. However, we can share our experiences which may help others. I had a friend who was experiencing very similar issues as your daughter. Took years to diagnosis but she had Celiac Artery Compression Syndrome. With surgery, she is now living pain free.

I’m going to post several articles for you to see if this is similar to your daughter’s experiences.

This article from the University of Chicago MALS program.
https://www.ucmals.com/diagnosing-celiac-artery-disorders/
There are also several discussions in the forum with other patients (or caregivers for them) posting in conversations, like @sandyskw13 whose 20 year old daughter has symptoms much like your daughter.
Possible MALS and/or SMAS
https://connect.mayoclinic.org/discussion/possible-mals-andor-smas/
Another from member @cowtownusa.
Update on MALS situation
https://connect.mayoclinic.org/discussion/update-on-mals-situation/
From the MALS foundation.org.
https://www.malsfoundation.org/what-is-mals
There are more discussions which can be found by typing in MALS in the top search box.

I may be off base, just wanted to give you another potential lead. Has your daughter been seen by a vascular surgeon, interventional radiologist or gastroenterologist who could check for MALS?