GI question

[MomtoGiuliana]

If anyone can give me any suggestions, I would be most grateful! To preface, I think autonomic problems do run in my family. Two of us have been diagnosed w/ POTS. Another of my sisters has been having GI issues off and on in recent years--but also as a child--with no diagnosis. She had a thorough work up 2 years ago by a specialist and they found no problem. This week the symptoms are starting up again. Her main symptoms are nausea and pain in her left side. She can barely eat without having a great deal of discomfort. She is of course discouraged with her doctors, and doesn't want to go to the trouble to go back to them with the same complaints, as they gave her a clean bill of health the last time these symptoms occured.

My main question is--can anyone recommend good sources, on-line or otherwise for her to learn more about GI conditions--particularly anything that might be caused by autonomic dysfunction? Also, if you have any other thoughts on this--I would really appreciate it! I don't really know how to advise her at this point, beyond recommending that she go back to her doctor.

Katherine

[MightyMouse]

Katherine, here are some links I've collected over the years. As you know, GI dysfunction has been a major problem of mine (gastroparesis, dysfunction of sphincter of odi, and atonic gallbladder).

Info on gastroparesis and dysmotilities

http://www.gpda.net/page12.html

Amer. Motility Society

http://www.motilitysociety.org/

Billiary Diskensia (sphincter of odi dysfunction)

http://www.top5plus5.com/Pancreas/Sphincte...Dysfunction.htm

That's all I've got--Hope you find something helpful. Nina

[Guest tearose]

Katherine,

I am sorry that your dear one is suffering like this.

It is only a beginning but if you dig deeper maybe you'll find an open door from one of these...

http://www.gastro.org/

http://www.gastrojournal.org/scripts/om.dl...or=home&id=gast

I only know I have delayed digestion at times when I am more symptomatic with my POTS. Well, my gallbladder was also diseased. I can't share much else right now. If I come across anything I'll let you know.

Good luck with your research, let us know what you find.

tearose

[Gena]

In addition to the great sites that Mighty Mouse and Tearose mentioned, another GI issue that seems to be common among POTs patients is celiac disease (gluten intolerance). Eating anything with wheat, rye, barley or oats in it can cause a lot of discomfort, pain, bloating...celiac is an autoimmune reaction to gluten found in the grains, which damages the small intestines.

A simple blood test can determine if someone has celiac.

[BuddyLeesWife]

I use the medscape advanced search feature quite often - I like it because you can sort the articles by publish date so you always see the newest and most current. I did an advanced search on "IBS and autonomic" and also "gastroenterology". It looks as though they are trying to establish a Gastroenterology resources page but so far the only information out there is on Inflammatory Bowel Disease and Crohn's disease.

www.medscape.com

It requires a free one time log-in - I signed in as a medical professional.

[MomtoGiuliana]

Thanks so so much, all of you. I have looked at most of the sites you recommended. Thanks Gena for reminding me about celiac. I don't think my sister has been tested for that and that would be easy to do.

I really feel for her b/c she is so unwell again and facing the usual uphill battle with skeptical doctors that most all of us have also faced. She is also under some stress right now b/c the job she has now ends in September and she is looking for another job. I can't help but wonder if there is a connection there to some degree.

What seems to rule out gallbladder problems is that her pain is on the left side. Is it possible (anyone out there with gallbladder experience) to have mostly left-sided pain with that?!

Thanks again and any other thoughts/ideas are certainly appreciated!

Katherine

[Guest tearose]

Katherine,

...yes, gallbladders are on the right side...that being said, you probably know that sometimes they can be found in an "odd" place, very rare, but still it might more midline still not on the left.

However, when a gallbladder is diseased it can cause referred pain and other problems "in the gut". I would find it rare to find it in a young child though. It takes many gallbladder attacks to cause it to become that diseased. I'm sorry my answers are not more definitive. I did wonder if my appendix was failing when I was so sick with gi issues.

I guess they have ruled out the appendix being a problem?

take care, tearose

[MomtoGiuliana]

Hi tearose

Yes, I guess I did wonder about the possibility of referred pain. Apparently appedicitis was ruled out when she had these exact symptoms two years ago. When she was a child her symptoms were different, from what I remember--pain in the middle of her stomach and not much if any nausea. Like this, the problem came and went--most of the time she felt fine--she was evaluated as a child and they thought she could be lactose intolerant so for awhile she was off dairy. Eventually she started back on dairy and GI symptoms didn't return until 2-3 years ago (she's 31 now).

BTW, 2 years ago her doctor's first thought was that she might be pregnant. Her nausea was and is so bad that she can barely eat.

It's such a puzzle--I just have a feeling that it is related to autonomic problems or autoimmune problem in some way, since I have both and another sister also has POTS.

Thanks so much for your concern and your thoughts on this!

Katherine

[kristinp29]

Hi Katherine,

I had these symptoms when I first starting experiencing symptoms from POTS, and nothing was ever found GI-wise. When I was diagnosed about 2 years later, my neuro told me that this was simply from POTS.

Hope she finds relief.

Love,

Kristin

[DSM3KIDZ]

Has she had a Delayed Gastric Emptying Study? My doctors couldn't find anything wrong with me until I switched doctors and requested this test be done. I had constant nausea for 6months. Alot of people on my support board at gastroparesis@yahoo.com have stomach pain. It's something I would look into. Plus one of the symptoms for some people is dalayed gastric emptying. My POTS and GP are from autonomic neuropathy. But I'm still in the testing process so it might involve more. I think it was caused by a stressor or viral since they both came overnight.

Good Luck

[MomtoGiuliana]

Thanks for that lead! No she hasn't had that test done. She gets this set of symptoms from time to time, and once it appears it goes on for at least a week. Between episodes she has no GI problems at all. She can't link it to any foods or stressors. Now she is feeling totally fine again. But, I will pass this on to her. One problem is that her doctor is convinced there is nothing wrong, so he may be unwilling to probe further.

Thanks, Katherine

[DSM3KIDZ]

For the Gastric Empty Test she would eat radioactive eggs and lie on a table while they watch them digest. My test was for 3 hours. So it's not invasive.

Good Luck

[MomtoGiuliana]

I talked to my sister and turns out she did have this test and it was normal. She is again experiencing sustained nausea. I can't help but think it is related to some kind of autonomic dysfunction, since another sister and I have been diagnosed with POTS. She gets other odd symptoms from time to time as well--but the main ones are nausea and this left-sided pain.

Thanks for responding, Dayna.

Katherine

[LindaJoy]

Hi, Everyone. I have a couple of questions about gastroparesis. Last April, I had my gallbladder out because it was diseased. I thought that would take care of my stomach problems. A month later, the stomach pain came back. By October, I was having pain in my chest that sent me to the hospital. They did an endoscopy (?), put the scope down my throat, and it showed gastritis and GERD. A few years ago, my Cleveland Clinic endocrinologist told me that my stomach problems (pain, bloating, gas, etc.) were being caused from my food just sitting there--he gets so technical. That's all the further he went. Anyway, can gastroparesis cause gastritis? Or, are they the same thing? My gastrointerologist who did the scope said that I produce too much stomach acid, but he doesn't know why. I guess if the food in my stomach wasn't going anywhere any time soon, the acid would continue to accumulate. Sorry this is such a mixed bag. Hopefully, someone can decipher what I'm trying to ask. Could the gastritis be gastroparesis?

Thanks. Linda

[DSM3KIDZ]

I don't think gastritis can be gastroparesis. Gastritis is an inflammation of the lining of your stomach. Gastroparesis is slow digestion. My first GI told me I had gastritis and left it at that but after months of nausea I found another GI who immediately did gastric empty study which showed I had gastroparesis. I take aciphex x2 a day because I believe that when the food sits there, so does the acid (I could be wrong.) If I get off the acid meds my nausea gets really bad (dry heaves, yuck!.