Can anyone relate?

I have Celiac disease but it is under control but a little over a year ago I started having severe abdominal pain when I would eat. I was treated for two types of SIBO and I had SIFO as well but I never improved. My specialist mentioned possible IBS but that was all that was said. I have lived in fear of eating for this past year and lost so much weight and was not getting enough protein and vitamins that I started showing signs of liver failure and now my heart could not longer keep up so I had to have a pacemaker a month ago. I just had a CT scan which appears normal. My family has been making me eat three times daily since I almost died from my heart failing. The pain continues with eating despite eating right for the past month. I am up to 127 pounds now but I fear I will slip and stop eating again because it is too painful. Has anyone ever almost died due lack of food over IBS? Should I ask my specialist if this is the cause being my tests look good or have them check again for SIBO and SIFO? I am afraid I will die if this does not stop. Am I doing this to myself? Am I just mentally afraid and it is causing this? I feel crazy and so not know what to do.