Are these GI symptoms sounding like HEDS?

My 7 year old daughter has HEDS. Her twin brother just had a colonoscopy/endoscopy bc of stomach pain/constipation which seemed to be potentially related to eating gluten. When they did the tests they found he had an extremely floppy colon going every which way, and also inflammation in the duodenum. I brought up the HEDS (again) and the doctor said that that can cause the floppy colon. Has anyone heard of inflammation caused by EDS? What are the typical GI symptoms for HEDS?

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Hello DedeKay,

There are many GI issues that can be seen in HEDS thanks to the amount of collagen in the system. Here are just some of what can be seen:

"Although structural abnormalities of the gastrointestinal tract are common in EDS, due to the fragility and extensibility of the tissue. Hiatal hernia, gastric, duodenal and colonic diverticula may occur. Other features which have been demonstrated are visceroptosis (protrusion of the contents of the abdomen), slow motility, delayed gastric emptying, gastric atony (lack of contraction of the stomach), recurrent abdominal pain, gastroesophageal reflux disease (GERD), megaoesophagus, irritable bowel, constipation, diarrhea, megacolon, bleeding, ruptures, and perforations.

(Solomon JA, "GI Manifestations of EDS" Am J Gastroenterol 1996 Nov; 91 (11): 22820-8) (Poken-Harris "The Prevalence of Non-Surgical Complications in the EDS")"

Here are other articles about GI issues seen with EDS: 8888988

Also know that food allergies and celiac-like symtoms seem to be common in EDS, so treating those through diet changes are beneficial as well.

Gentle hugs...

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I've had GI problems since I was in elementary school as wel and I've never had a doctor come close to diagnosing it other than the muscles around my intestines/colon werent strong enough to push things through or something liek that which is probably connected to the connective tissues and linings being overly stretchy. I've had multiple testing and they havent really found much. the only test that was conclusive was a stomach emptying scan that showed my stomach empties slowly so that causes stomach pain and also I have high acid levels too.

sorry not much advice but I definately think it is EDS related...not that that is encouraging

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We were just at the gastro today and scheduled for an stomach emptying test next week...My daughter has already had the endoscopy which found gastritis but not much else and the stomach pain and nausea comes and goes pretty often...She also feel full very fast....She takes Dexilant which helps her a i do believe GI issues go along with HEDS...

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Not sure but the inflammation needs to be investigated to get at teh cause. The duodenum is critical to absorption of nutrients.

With that said, testing for celiac probably needs to be ruled out. Also, mast cell stuff might one area to investigate. UNLESS they actually do the testing necessary, they can not comment on mast cells in the area. They won't do unless specifically asked to do AND they are familiar with such. Yet, they will comment and say the mast cells are normal. that's the way it is with pathologists right now.... even at the Brigham. (Been there, done that). If you are interested in the mast cell end of things, I have the article showing that the proper staining is the only way to reveal if mast cells are part of the issue. Let me know if you are interested and I'll look it up.

Lastly, intolerances to foods are not fully explained or accepted. If all else is ruled out, an elimination diet with various mast cell/allergy supplements can help. I can list those if interested.

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