I am sorry for your ordeal and hope it will improve on the celiac diet.
This really makes me think hard on getting my daughter on a gluten-free diet ASAP! I have fibromyalgia, epstein barr syndrome and 2X tested inconclusive for lyme. When i eat more proteins and good fats i tend to do better. I have wheat issues, i react after eating what in an allergic type ways hives, brain fog/spacey feeling, runny nose my eyes ache and run, i get phlegm other stuff also. More tinnitus, more nerve problems etc etc. Also i have hair thinning issues and i am a female who is not yet 40! I have done a celiac test and it did not come up positive but that was about 1.5 years ago, got another one done abt 3 weeks ago have to go to dx to see results..
Anywhow but re my daughter who is almost 14 she has had severe bouts of stomach pains for years. It was more sparse but lately it happens on a weekly basis, to varying degrees of severity. She is eating wheat almost daily. I want to get her to do the blood sample test but i know it may not be conclusive the only real way is to avoid all gluten and see how she fares! She has bm daily they are ok but roundish not in one piece at all. At times the pains are not so terrible but sometimes it's literally like food poisoning, she sits on the toilet has diahhrea, major stomach pain to the point of perspiring...Sometimes i can trace it to wheat sometimes to artificial food colors or flavors with i try hard to not buy but it happens when she is outside the house.