Okay GI friends. I love this discussion. Big, important thoughts. I also think we may have a MTHFR mutation at the bottom of this whole mess. Either that or a mild chromosome 22q 11.2 deletion ( DiGeorge syndrome) issue. ( could MTHFR be part of that ? must check) Malrotation of the gut can be associated with the chromosome 22q 11.2 deletions - as can a multitude of other ( often minor) congenital issues. Like spina bifida occulta - both me and my one child have this. Also these other issues can be part of 22q 11.2 deletions: tethered cord, scoliosis, vertebral anomalies - like cervical ribs (me), extra vertebrae, high-arched palate ( I've got it), foot/finger/toe oddities( me again), late descent of testicle ( my son),scoliosis( yes - me, all thru maternal line), mild urogenital anomalies, allergies/immune issues, Chiari malformations, structural heart issues (yes - Mom's cousins, my great nieces), speech delays ( my son and my nephew) etc etc etc. So, the gut issues are never an isolated problem. The geneticist told me: People never get just one congenital issue. I did not have the $$ to test for 22q 11.2 deletions, but maybe we could encourage this research.
Many of these congenital glitches do not have huge problems associated with their presence - like cervical ribs, funny toes/fingers/feet and so on. But a gut that that long, hypermobile, or twisted a bit may be a huge issue that triggers numerous immune and dietary issues. Plus, the gut and autonomic nervous systems 'talk' constantly. In spinal injury patients the 2 biggest causes of "autonomic dysreflexia" are a full bowel and a full bladder. So could these kinky colons be "setting off" our entire autonomic systems ?
Try this site:
http://www.obstructed-defaecation.com - by Professor Dr. Deya Marzouk, colorectal surgeon. This doctor understands structural issues associated with gut problems.
Yes, I wish there were easier answers - a pill, a 'program,' something. But I have led a support group for 10 years, and struggled for 14 years. No easier answer yet.