My teenage DD has autoimmune arthritis but they say it's not related. Other autoimmune diseases are known to be related like lupus and MS. We are seeing a neurologist this week to see if autoimmune dysautonomia is a possibility--they can test for anti-ganglionic antibodies and it is treatable. Unlike the GP, which is devilishly hard to treat. We are also getting the test for SIBO, which is also treatable.

To those of you who have gastroparesis....do you have other health issues that relate to it? Diabetes, MS, etc?

I don't know if anyone remembers me, but maybe six months ago I started a thread asking if it was normal to throw up multiple times a day. Everyone told me of course not and I should go to doctor. Got dx with gastroperesis but also did a breath test for a few hours and was dx with sibo. Took Rifamaxin and it helped, symptoms starting toco e. Back and just learned I should have been taking probiotics and doing fodmap diet as well (did not do follow up visit after antibiotics). Anyway get tested for sibo. Painless no risk test.

Blender. Smoothies are easier to digest.

Hard to find this thread amidst all the Ebola posts.

My teenage DD also has gastroparesis. It totally sucks. On a good day she throws up ten times, on a bad day it's more like 25. It was manageable with Zofran until two months ago. At this point saltines and ginger ale constitute 90 percent of her diet and she has lost 15 pounds. Sometimes she can keep down Boost or Ensure for some minimum levels of nutrition.

She couldn't go to college and can't work. She also has an autoimmune disease but it can't be treated because throwing up interferes with med absorption. She won't take reglan because of the risk of tardive dyskinesia (correct choice IMO). It's a mess.

We've just seen Dr. Antoinette Saddler at GW who seems very promising. Have also heard good things about her colleague Dr. M. Aamir Ali. It will take at least six weeks to get an appointment unless you can get a doctor to short cut it for you. Hopkins has two motility experts who are still taking new patients. It takes about four months to get in, although a doctor referral will get you in earlier.

The previous so-called motility expert we saw at Georgetown told us, "When I have patients with gastroparesis I feel like a neurologist; I can diagnose them but I can't do much to treat them." Way to give hope to a teenager.

Good luck OP.

Mine has improved slowly over the course of two years, but I still throw up a few times a week.
Reglan helped a lot when I was at the worst. Going GF also helped.

She also has a website that has a lot of information thats in the book.

Thank you so much!! Looking up the book now!

Anonymous wrote:Pp here with mom who has GP. She has been seen by GI specialists in our hometown and at Jefferson Hosp in Philadelphia. I'm not sure anyone suggested the pacemaker but I will ask her tomorrow morning when I call her. She just had an arteriogram done which found a 70% blockage into the main artery of her stomach. They placed a stent and she seems to be improving ever so slightly.

Yes, we know she has lost too much weight. We are doing our absolute best to get her better s d keep her alive and well. I'm expecting my first child any day now and this has been very difficult for me to watch her suffer.

Get her that book, Living Well with Gastroparesis -- it really is very helpful. I'm surprised no one has suggested the gastric pacemaker.

Congrats on the baby!

Pp here with mom who has GP. She has been seen by GI specialists in our hometown and at Jefferson Hosp in Philadelphia. I'm not sure anyone suggested the pacemaker but I will ask her tomorrow morning when I call her. She just had an arteriogram done which found a 70% blockage into the main artery of her stomach. They placed a stent and she seems to be improving ever so slightly.

Yes, we know she has lost too much weight. We are doing our absolute best to get her better s d keep her alive and well. I'm expecting my first child any day now and this has been very difficult for me to watch her suffer.

Anonymous wrote:check out GAPS diet. You can heal this.

OP here. I don't know who you are but you shouldn't offer this kind of BS advice. You clearly know nothing about gastroparesis. A diet rich in fresh vegetables and nuts (I goggled it) would put me in the hospital.

I went to an acupuncturist this morning and feel somewhat better. Perhaps its a placebo effect but there have been studies showing its beneficial so I'm giving it a shot.

PP whose mother has it, there's a new resource since I was first diagnosed, a book and website called "Living Well with Gastroparesis." Lots of good, solid information. Your mom has lost too much weight. has she considered a gastric pacemaker?

check out GAPS diet. You can heal this.

My mom has it and lost 45 lbs since my wedding in December. It's been terrible.

my neighbor has it--she sees a GI guy at Georgetown, don't know the name she also sees a holistic doctor who was in Fairfax at Natural Horizons but now is in SIlver SPring. SHe gets acupuncture. She is very thin--eats purees most of the day, but now can have basic proteins like plain fish.

I've had it on and off for years but am now going through a bad spell. I can't take reglen so I just control it by limiting my food. In the past I've only had to do that for a couple of days and then I've been fine but this episode is lasting longer and I'm losing too much weight. Any advice anyone can offer would be appreciated including any specialists in the area. I'm not diabetic. Thanks.