Hi all, I'm hoping someone might be able to offer some help on this question:

My son has been having ongoing upper digestive issues, still undiagnosed but with symptoms resembling early stages of chronic intestinal pseudo-obstructions. Since this is quite possibly a autonomic/neuropathic issue I am trying to see if he can be helped to any degree with nutritional supplements.

I'm thinking that since the autonomic system is small fiber, that the typical supplements that can help with general SFN might be beneficial here. Does anyone have any advice or experience with this type of issue? Just trying to figure out the best way to support nerve health in the upper GI area.

Thanks.

I have congenital GI issues which do sometimes end up in obstructions. It is called malrotation. Malrotation grade I ends up with the GI tract outside the body-- rather rare and very hard to fix. I have grade II which is GI tract inside, but twisted up ..mine rotated 90 degrees. It has been a lifetime of "attacks" which are exhausting and painful. I have to avoid gassy foods, like cabbage, and broccoli, and some fruits. I cannot tolerate beer, or coffee. If I have a soda, I let it go mostly flat before drinking.

I have discovered in 2016, that l-glutamine is very helpful. I only use 500mg a day. Humans have a need for glutamine, and typically 1/2 of a dose remains in the GI tract to promote healing and maintenance.

I don't believe my issues are PN oriented since I have had to watch my food carefully to maintain a comfortable day since birth. I also cannot wear tight clothing. For a man that would include no belts.

Thanks Mrs. D.
Some background on my son, I posted last April about him - but haven't updated in some time:

He had a c-diff infection 6 years ago, and after that he had episodes of severe nausea and cramping about every 12 weeks. After a complete GI workup, he was tentatively diagnosed with cyclic vomiting syndrome.

This pretty much continued until last April, when he had two ER visits for appendicitis like symptoms. The first time they just sent him home saying it was just one of his usual episodes. A few days later it recurred and he went to a different hospital. They did imaging and said his appendix was inflamed, but so was the surrounding intestine. They felt it wasn't appendicitis, but was "90% likely to be Crohn's Disease". They gave him antibiotics and prednisone and told him to follow up with a GI specialist.

Additional detailed testing by a GI doctor didn't show any signs of Crohn's disease, and he was in a "wait and see" mode.

Then in July he again had severe abdominal pain. This time, imaging showed what appeared to be an obstruction but without an obvious mechanical cause. He spend some time in the hospital with an NG tube in, and the doctors went back and forth on whether they should do exploratory surgery. Eventually, they re-examined all the imaging and felt they may have seen an inflammatory cause for the obstruction. They gave him prednisone again, and things almost immediately cleared up. At that point, they were again suspecting Crohn’s disease. However, follow up testing including a “camera pill” that took internal pictures of everything from his esophagus to his rectum again showed no signs of Crohn’s Disease, or any narrowing of the intestines.

Then in November he again had severe pain and went to ER. This time he did have appendicitis and unfortunately it ruptured. The surgeon that did the operation was very experienced. He was concerned that there could be inflammation beyond the appendix based on his history, and prepared us that it might be necessary to remove a portion of the intestine if that was the case. Fortunately, that was not the case. The surgeon did have to flush out the abdominal cavity due to the rupture, and treat him with antibiotics. He indicated that there was no visible sign whatsoever of any additional inflammation on the exterior of the intestines.

At that point, his GI doctor finally indicated that she felt it extremely unlikely that he has Crohn’s disease, but rather some “functional” disorder that has caused all the pain, nausea, etc. She put him on Amitiza to try to “keep things moving” through his system.

I initially felt a great deal of relief that it was “only” a functional disorder – until I did some research and realized how bad these functional disorders can get, and how difficult they are to treat. He is still having the same type of issues, although right now they are more frequent but less severe. I think the next stop is a motility specialist. However, since motility is very much a neurologic process, I want to make sure he is getting the right nutrition and supplements to support the neurologic function of his digestive system.

Sorry for the long post – please let me know if anyone else has any thoughts.

The glutamine may be very helpful. I don't have any side effects and it is not expensive.

Did you know for humans breast milk has much higher glutamine content than cow's milk? Human babies have a high need for it.

1 L-Glutamine Benefits, Side Effects & Dosage - Dr. Axe

I wish I had learned this earlier in my life.

Thanks again for the advice Mrs. D. Here's the things I'm going to recommend to him based on what I've found so far:

-Vitamin D (he's already taking this)
-B-12
-Magnesium
-CoQ10
-L-Glutamine

I'm also going to order him a 23andMe genetic test, to see if he has the same MTHFR A1298C mutation that I do. (That would point to some additional supplements as well.)

Anyone else have any ideas or experiences that might help?

Just a follow up for Mrs. D and anyone else who saw this post last year:

My son continued to have major and worsening digestive issues until last September when we and the doctors finally determined that an exploratory surgery was necessary. They found he had Meckel's Diverticulum including a mesodiverticular band. (A congenital defect found in about 2% of the population, but is normally asymptomatic.) In his case, it grew very large and twisted around his small intestines causing intermittent obstructions - very similar to your malrotation issue. It was necessary to remove the diverticulum as well as about a foot of his small intestine, but after a somewhat challenging recovery, he no longer has any issues. He can now eat anything a normal 23 year old can, without worrying about horrible consequences.

So in the end, it wasn't a functional or neuropathic issue at all.

BTW, he did use the L-glutamine you recommended prior to his surgery as well as through the recovery process - and it did seem to help him recover faster after his "episodes". So, we do thank you for your suggestion.