PLEASE, PLEASE, PLEASE don't do ANYTHING until you have had both your daughter and your son tested for Celiac Disease (again). MANY of these symptoms that she is exhibiting sound like they could be related to gluten intolerance/sensitivity. You mentioned that she had been tested for gluten intolerance before; what many people don't realize is that those tests will generally only "catch" people whose intestines have Stage III or IV damage. However, health issues can arise much earlier than that. Also, some people are seronegative, even though they do, in fact, have Celiac Disease.

How long ago was she tested for gluten intolerance? Many doctors don't realize that gluten's effects are CUMULATIVE, so it is possible to test negative at one time, and then test positive later. I would highly recommend that you do a trial gluten-free diet for a month or two - have them tested FIRST, though, or the test results could come back false negative. CD is quite common (1-in-133), but a LOT of doctors aren't aware of how common it is, as they were taught that it was a rare (1-in-5000) condition. Many of the national CD associations are doing as much as they possibly can to get this information out to medical personnel, but it is taking time to reach all of them.

Researchers are now starting to focus on gluten sensitivity as another condition - unfortunately, this won't show up on any test; the only way to know if a person is gluten sensitive is to do a trial GF diet for a month or more (my husband was "diagnosed" this way). It can't hurt to try it; the only food group that is really "different" is the bread/cereal category. GF foods are becoming much more common on grocery store shelves and in restaurants.

Here is a link to more information:
http://neurotalk.psychcentral.com/post8767-2.html

Since your daughter already has one auto-immune disease (MG), she is at risk of developing another one. Celiac Disease causes the intestinal lining to become eroded, which causes malabsorption of nutrients, which in turn leads to a myriad of health problems. Believe it or not, her inability to move things through her intestinal tract (gastroparesis) could be related to this - it is one of the problems that some people with CD encounter - due to the fact that the intestinal lining can become very lax, and muscles can become very weak.

It will take about a year or two of a COMPLETELY gluten-free diet before her intestinal tract gets completely back to normal, but she will probably start to see improvement long before that. If a person has CD or gluten sensitivity (which won't show up on any test), they MUST stay on a GF diet for the rest of their life (the only known "cure" for CD at this time). Our family has been GF for the past 2 years, and it isn't nearly as hard as a lot of people say that it is.

CD is a genetic disease, so if one person in a family has it, EVERYONE in the family needs to be tested - it certainly sounds like your son may have it as well. It is also recommended that family members who initially test negative continue to be tested from time to time, as gluten's effects on the body are cumulative. There is also a test that can be done to see if your daughter/son carries one of the genes that are seen in 95% of the CD cases.

My guess is that if your daughter has CD or gluten sensitivity she will GREATLY benefit from a GF diet - I noticed that I felt better within 24 hours of starting on a GF diet. Her muscle tone will also greatly improve, as her muscles will be getting all of their nutrients as well - my muscle tone improved without any exercise whatsoever!

DO NOT LET ANYONE OPERATE ON YOUR DAUGHTER until she has been tested for Celiac Disease! Don't let anyone do anything until she has been on a GF diet for at least a year or two! Where are you located? There are several REALLY good Celiac Disease Centers around the country, but most major metropolitan areas have a Gluten Intolerance Group (GIG) chapter or a Celiac Sprue Association (CSA) chapter that can point you to a doctor in your area who is familiar with Celiac Disease and Gluten Sensitivity.

There is an excellent book: Celiac Disease: The Hidden Epidemic by Dr. Peter H.R. Green, M.D., one of the leading Celiac researchers in the USA. You may be able to find a copy in your local library, or you can order it from Amazon.com - they just came out with a revised version earlier this year.

If you have any questions, PLEASE feel free to contact me - our daughter is the one who was diagnosed with CD two years ago. Since she has Down syndrome, I have done a LOT of research on her behalf - which is how I realized that I might have it as well (and sure enough, I did). I hope this helps in some small way!