i have unexlplained gi issues. same scenario, hospitalized for it a few times along with frequent er visits. most drs chaulked it up to being anxious. but what they don't get is why wouldn't unexplained pain make anyone anxious. one dr said there may be a connection. i get chronically consitpated and they said shunts might help.
the whole thing is unreal. it could be worse. i just read about some people with the vascular. i just have a severe case of hyperflexibility.
just keep plugging along and keep advocating for yourself till you find an answer. i'm going back to my geneticist for a recommnedation of a gi dr with experience with eds.
good luck. please keep me posted and likewise if there is some sort of connection made betw eds and the gi problems.
also, i manage my flair ups and general discomfort by switching to a bland diet. not as high fiber, still a decent amount.
i cut out dairy, soy, and gluten. it really helps! but having a salad hurts as much as fried food. its weird.
at least give up dairy and sugar from when you start pms through your period. it makes a world of difference.
acupuncture helps too.

I was diagnosed with EDS 10 months ago, and I found out in January that I am gluten intolerrant. I'm on a gluten free diet now and my stomach problem have disappeared, unless I mistakenly eat gluten. I don't think my stomach problems are as severe as yours, but it might be something worth trying/finding out!!
Best of luck!

I have EDSIII. I also have serious GI problems. Until about age 40 I had a "cast iron stomach" and could eat anything. Then suddenly, I started having pain in my upper abdomen, changes in stool consistency and frequency, and periods of weight loss even when eating huge amounts of calories. I had my gall bladder removed, but it helped very little, if at all. For 25 yrs I was told I had irritable bowel syndrome, or Drs would imply that I was a hypochondriac or bulimic. I became unable to tolerate one food after the other over the years, and finally I became unable to tolerate any food. I became so ill that I was on the way to dying. Finally, I saw a Dr. who diagnosed me with pancreatic insufficiency. My pancreas does not produce enough (or maybe just not high enough quality) digestive enzymes. So I was not digesting much of the food I was eating. When food goes through your GI tract without being digested, it sets up sensitivities to those foods. So I was having reactions to all these foods that were just like allergies to the foods, but they did not show up on skin or blood tests for food allergies, because they are not caused by IGE components of the immune system, and by definition, only things which trigger IGE antibodies are considered true allergies. Since I started taking prescription digestive enzymes with every meal and snack, I am able to tolerate many foods again. Because I went undiagnosed for so long I now have many other serious problems too. I wish I knew if EDSIII has anything to do with whatever is wrong with my pancreas.... why it stopped producing digestive enzymes. If anyone knows I would like to hear. Keep looking for a Dr who will really listen to you and who will do whatever testing is needed to get to the bottom of your problems!!! Don't give up!!!!

I have type 2 EDs and am being tested for VEDS, I have moderate stomach issues, lose bowel problems, vomiting (which my docs said was anxiety) Anytime im under stress i vomit, and cronic bowel pain which i read is an after effect from EDS..just one more issue with this disorder

Gastritis and Diverticulitis and IBS. Was dx with hEDS, getting ready for testing for classic. Doctor gave me some kind of stomach flexeril, not sure what it was but it helped a lot. A muscle relaxer for the GI track. Good stuff, the cramping stopped. GERD too but aloe vera juices (I recommend Georges brand doesn't have a fowl taste - it's just like water) worked for that. My body doesn't handle medications well so the aloe was a good thing. Don't drink a lot, it will send you to the bathroom if you drink too much. I do about 1-2 oz a night.

When my daughter and myself were diagnosed with EDS by Dr. Peter Rowe he informed us that the defective gene that carries the Ehlers Danlos Syndrome also carries an allergy to Milk Protein (this stands true for my daughter and my 3 grandchildren. My daughter was also diagnosed with Gilbert, where the liver enzymes are higher then normal and she also has a chiari. The milk protein allergy for myself is extremely painful like a knife ripping in the inside, it is horrible pain.

HI! I'm just in the (terrifying) process of getting diagnosed with hEDS, IBS & a skin issue - I've literally just switched to a low FODMAP diet to help with the tummy issues. It's a steep learning curve (esp as I'm also vegan) but doable, and goodness knows I'd do anything to not have a constant sore tummy on top of anything else! Recommend googling fodmap and seeing what you think :)

Wow! I can’t believe all of the similarities I am seeing. I have not been diagnosed with EDS, but I had a feeling I had it when I attended dental hygiene school and came across it in a book. I am finally piecing my symptoms together to relate it. I have always been able to hyperextend my joints, stick my tongue up my nose, been told I have the softest skin ever by many people, and always felt like my ankles would dislocate when I ran. I have bad shoulder pain. I had to have my gallbladder removed at 27, have had terrible constipation most of my life, suffer migraines, and was recently diagnosed with a hiatal hernia. I’ve woken up in the middle of the night several times vomiting and feeling like I would die from the extreme GERD pain. My AST afterward this one attack was 66 (normal range 10-30) and my ALT was 157 (normal range is 6-29). I am on Famotidine, which has been life changing, but my question for everyone is what has helped you all with constipation? Anyone else suffer from migraines and looked into Chiari? Thank you so much in advance! I plan on making an appointment with my Dr ASAP to proceed with diagnosis.

Your gut is made of connective tissue. EDS is a connective tissue disorder. That's why you have GI issues. If your doctors haven't figured that out, then they didn't pay attention in medical school.