Hi, MG Mom. It's interesting that both your kids have MG. Do they have positive Acetylcholine antibodies? I am asking because there are the Congenital Myasthenic Syndromes, which are caused by a genetic mutation and tend to run in families. There are also "familial MG" too.

http://neuromuscular.wustl.edu/synmg.html

First of all, acetylcholine does indeed effect the stomach. Neuros don't know everything! In order to make stomach acid, vital to digesting food, you have to have three things: acetylcholine, histamine and gastrin. I stopped having stomach acid since about my late 20's (now 52). Without stomach acid, food does not get digested properly. It sits in the stomach and then "dumps" into the small intestine. It can back up, with bile, into the esophagus due to this, which sounds like what is going on. I also had reactive hypoglycemia due to this (a sudden drop in blood glucose), which brought on "shake attacks."

You may want to ask them to run the parietal cell and intrinsic factor antibodies. Pernicious anemia is common to occur with other autoimmune diseases. People with PA don't have any stomach acid because the antibodies attack the stomach.

You could try - or ask your doctor about trying - adding one tablet of Betaine HCL to each meal to see if that helps. It is a very mild acid usually made from sugar beets. I use the Solaray brand from iherb. I've been using for 11 years. My Mom, whose doctors thought having her gall bladder out would stop her indigestion and belching, uses it too. Those symptoms did not stop after removing the gall bladder, only after taking the Betaine HCL 12 years later!

The other thing that a lack of acetylcholine does is to slow paristalsis. What is that? It's how muscles move food through the GI system. When I went off of Mestinon for a SFEMG, I got completely constipated. It was awful. It went away when I went back on Mestinon. How much Mestinon is she taking? Adjusting the spacing between doses, and the amount, may help. Some people, like me, need a fairly constant dose of Mestinon all day. I take mine every three hours (90 - 100 mg).

http://www.nature.com/gimo/contents/...ll/gimo13.html

You need to sit down and have a discussion with her neurologist. Try not to make him feel stupid about not knowing about acetylcholine and the GI tract! He's not a gastroenterologist or anything. But, hey, neither am I. A little research never hurts.

MG can change from when you are 8 to when you are 18. Hormone changes can affect it. You may need to consider more treatments. Have these GI changes been recent or have they been constant since age 8?

Just because they didn't test positive for celiac doesn't mean they won't get it at some point. Teresa makes a good argument. I have MG and celiac. I've had MG since birth and got celiac in 2004. So keep an eye out for symptoms. Do you know if they ran the Reticulin antibody?

Added fiber is a good suggestion too.

Have they had their urine pH checked? Sometimes doctors forget to "think" about basic stuff like that. Have they had a basic chemistry panel done? An alkaline pH may suggest a lack of stomach acid.

I certainly don't think carving someone apart is a great idea either. You can make MG much worse and run the even greater risk of infection. I hope you will do a little more research and think about how the body works and what may be going on here. Maybe some autonomic testing would be in order too!

I hope you can figure out what is going on so your kids get some relief.

Annie