[MG mom]

My daughter was diagnosed with MG at age 8 (she is 18) She was doing pretty good for a while and then started having major problems with her stomach. She is always so constipated and then has bile and acid coming up into her throat and vomits about 1-2 times per week at night or in the morning, straight bile. She has been having tests done at Shands and they are relating her stomach problems to MG but the neurologist says it is not MG. Also, she has bladder leakage at times and according to the last test done at Shands, she could not expel things from her rectum, so her rectal muscles are weak. Does anyone have these problems. She is only on Mestinon, not cellcept or prednisone. She has also had to have her gall bladder removed and her appendix as her stomach and intestines just move so slowly. Her brother who has MG also had his gallbladder out as well when he was young too. Something is definitely wrong but if it is not MG then what is wrong with the stomach thing. They both were tested for Gluten intolerance, Krohns and other things but all negative. My son has stomach issues but not as bad as his sister. Don't know what to do at this point. Shands wants to remove some of her colon and she would have to wear a bag. NOT GOING TO HAPPEN TO A BEAUTIFUL 18 YEAR OLD. When she did her colonoscopy prep, she drank a bottle of magnesium citrate, didn't go, then drank almost the whole 4 liters of that other stuff and still didn't go AT ALL. Called the doctor frantic because she was about to explode and we had to do an enema. She still didn't really go all that much and did another enema again before we left for the test. Then they complained that she didn't do her prep because she was not really cleaned out STILL. HELP.

[suev]

This may sound strange - but I saw a Mystery Diagnosis episode not too long ago that described many of the same digestive symptoms you outlined.

Turns out it was a rare disorder (I think genetic) that kept the digestive tract from moving food through his colon. He could not execute bowels movements efficiently cause the nerves ending in the colon never triggered proper peristalsis responses. It got worse - and frequently intervention (ER trips) were necessary because the situation caused blockages. Once cleaned out - he'd be better for a awhile - but the inefficient bowel eventually blocked again.

I am so sorry I can not remember the name of the disorder! It is rare - and a gastroenterologist was one who finally tested for and dx'd it. I'll poke around the internet and see if I can come up with the name of the disorder they featured. I do know that it was in no way related to MG.

Sue

[Koala77]

I think it's quite probable that your daughter's symptoms are neurologically based, but I don't know enough about MG to say if that's the cause or not.

I've had those exact same ones myself and my Neuro has confirmed that mine were brought on the chronic neurological condition that I have .....not that I'm suggesting she has the same disease as I do by any means, just that the cause could be similar in origin.

Neurological symtoms can come from the brain or the spinal cord in the back.

I daresay her back has already been considered as a source for her bladder and bowel disturbances, because there are conditions of the lower spine which can cause the symptoms you describe..... growths, slipped discs, spinal stenosis to name just a few.

You'll find charts on the Internet that show which spinal nerves control which functions. For example... the last of the Thoracic Vertebrae (T10) along with some of the Lumbar Vertebrae, control the large bowel and the urinary bladder, while disturbance of the Sacral nerves can also have some detrimental effect in the same area.
Here's the link to one such chart : http://mississaugachiro.com/interact...erve_chart.php

Also, have a read about Gastroparesis. There are many causes for this condition, one being disturbance of the Vagus nerve (neurological again), and although it wouldn't explain her urinary incontinence, it certainly would explain the bowel symptoms.

It sounds like the doctor was talking about a total colectomy when he mentioned the bag. That involves removal of all the large bowel which is rather a drastic step to take for an 18 year old, and not one to be rushed into. I daresay if her symptoms go on for many years, or lead to bowel obstructions because the waste isn't moving through the bowel, then that's something to be considered at a later date, but not until all other avenues have been exhausted. I had a partial colectomy 3 years ago to remove a growth and I was lucky enough not to need a bag. Should I need surgery in the same area again, I doubt I'll get out of it so lightly.

Good luck to you both. I hope you find some answers soon.

[MG mom]

Thanks for the great info. She did actually have fluid in her spinal chord when she was younger that they watched for several years but it resolved. We never knew why it was there. They have not checked that area of her back for a while and it was in the thoracic area. I will definitely have that area checked again. Thanks so much. Also, she has acid reflux and bile coming up into her esophagus that remains there constant for over an hour according to the test results from the BRAVO test. They wanted to do a wrap of her stomach around the top of the esophagus but I will not let them do either of those surgeries unless things become dire. She is too beautiful and young to do any of that stuff to her. She will continue to do other measures till things get too bad. The trouble we always have is that they blame everything on MG and my neuro says that MG does not affect the stomach. I think they need to look at just her stomach because I don't think they are related. I am not sure about the rectal muscles and MG though. I will request that they scan her back again because this all has really started to get much worse in the last year and a half. She has more leg weakness also. Thanks so much for all your great advice.

[Koala77]

Sorry MG mom... I just noticed the link I gave you to the spinal nerves no longer works.

Here's a different one for you. http://www.harleystreettotalhealthch...-spinal-column

Did your daughter have a mild spinal bifida maybe?

[teresakoch]

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!

[scrubbs]

I've read that the most accurate test for celiac disease is a biopsy of the involved small bowel.

[teresakoch]

Yes, the "gold standard" for CD diagnosis is a small bowel biopsy; unfortunately, the tools that they use for that only reach so far down into the small intestine. Some people have damage below that distance.

Some Gastroenterologists are starting to use a camera endoscopy - I believe it is one that you swallow that just passes through. Unfortunately, that won't get them any samples to test for villi erosion. It will, however, allow them to see if there is any mottling and/or scalloping of the intestinal walls.

There are some people who are "early" enough in their CD that even an endoscopy won't pick up any damage, though. Like MG, if a person is seronegative for CD, it can be diagnosed through a process of elimination. If a person has a positive blood sample, then they definitely have CD, but if they test negative they still MIGHT have CD. For some people, the ONLY "test" that works is a GF trial diet.

I forgot to ask if your kids have ever had skin rashes that took forever to heal - itchy or not. Some people who have sores/lesions that show up for no good reason (or sometimes a REALLY bad case of acne) may actually have Dermatitis Herpetiformis (DH), which is the dermatological manifestation of CD. Usually these sores will cause a "crater" when the blister on them pops.

About 10% of people with DH will NOT test positive for CD; however, if a person has DH, they AUTOMATICALLY have CD (I'm one of those people). I had sores that would crop up from time to time, and nothing would help. It wasn't until our daughter's CD diagnosis 2 years ago that I even made the connection - once I started on a GF diet, all of those sores started clearing up! There's no telling how long I had CD (I had rashes on and off since I was a child), because I didn't have any of the "typical" symptoms that would have made a doctor suspect it in the first place.

I also found out that I had tested positive for a wheat allergy back when I was 9, but we never did anything about it, because I never had any noticeable problem with it. Have your kids been tested for allergies, by any chance? If they are allergic to wheat, they might not test positive for CD, but that allergy could be causing a lot of their problems and a GF diet would definitely help.

Sorry to go on so long - just wanted to throw that out there for ya!

[teresakoch]

MGMom,

I didn't see any medications listed for your daughter that she may be taking for MG. A person in another thread mentioned that if a person is taking either steroids and/or an immunosuppressant, they will PROBABLY get a negative reading on a CD screen. If your daughter has been on either of those classes of drugs, it is entirely possible that she does, indeed, have CD, but her test results may be giving a false negative result.

The genetic test that can be done is the HLA Test for Celiac Disease - it will let you know if she has one of the more common Haplotypes seen the majority of CD patients. While the medications may "mask" the presence of CD, they WILL NOT cure it. The only known "cure" for CD is a gluten-free diet.

I don't know if an endoscopy would be affected by those medications either. You might want to ask your doctor and/or a gastroenterologist who is familiar with CD. I would hate for you to do an invasive procedure for no good reason.

You may just want to start both of your kids on a gluten-free diet, just to see if it helps any of their symptoms. It sounds as if they both have LOTS of the things that are seen in patients with CD. It's just a thought.....

[MG mom]

Sorry for the delay. My son just had eye muscle surgery for his MG, eye turning in and double vision. He is not feeling too good at the moment.
My daughter is not on any prednisone or anthing. She just takes Mestinon. Don't worry, I will not have anything, surgery or otherwise, done to her. She is 18 and beautiful. She is not going to have removal of her colon or anything until a lot more testing and proof that there are no other alternatives. She had a colonoscopy done a month ago and that was norma. They did not do any biopsies at all because they saw nothing. So, I don't know if they would see anything with Celiac disease or not but they didn't do any biopsies. We are going back to Shands tomorrow for a Flouro test to see if she can defecate while sitting up. She showed on the other test that she has a rectocele which is a hernia into the vagina. Probably from straining all the time. On and on it goes. Then we go back next week for a Rectal manometry and then an esophageal manometry. These are to test the swallowing muscles and the sphincter muscles. Loads of fun. I will keep you posted on the outcome. She just had a sitz marker study and that showed that she passed the markers but that she still has a lot of stool left in her entire colon at all times. She goes to the bathroom but doesn't every clear out enough like she should. I will keep you posted