Ehlers-Danlos Syndrome Support Group

Ehlers-Danlos syndrome is a group of rare genetic disorders caused by a defect in collagen synthesis. Depending on the individual mutation, the severity of the disease can vary from mild to life-threatening. Common symptoms are unstable, flexible joints with a tendency to dislocate and subluxate, and elastic, fragile, soft skin that easily forms welts and scars.

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Anyone with EDS & abdominal pain?

I have EDS Hypermobility Type (just diagnosed a couple of months ago), and have for years been dealing with chronic upper abdominal pain. Tests always showed either reflux, esophagitis, gastritis, or a combination. I also have a hiatal hernia. Now, adding to the fun, I found out that I have this rare condition called Gastric Antral Vascular Ectasia, or "watermelon stomach." My gastro said it's not supposed to be a painful condition, so the question as to what is causing the chronic upper abdominal pain is still on the table. On top of all of that, my idiot gastro has dropped my case, saying that there's nothing she can do for me. I am scheduled to see a new gastro on July 1st.

Does anyone else out there have gastrointestinal problems and/or pain relating to the EDS?

Replies

deleted_user
deleted_user

Unfortunately, chronic gastro problems are pretty common with EDS-have you had your intestinal tract checked? We tend to have motility issues and IBS, so if you get backed up really badly, it can cause some severe abdominal pain...

There is also the possibility of what happened to me a few years ago-do you still have your gall bladder? If so, have you been checked for gall stones? Gall stones can be extremely painful, and the gall bladder is right next to the stomach.
deleted_user
deleted_user

Unfortunately, my gastrointestinal tract has been checked so many times I've lost track. I also had my gallbladder removed years ago - 21 to be exact. The newest things these half-brained gastros have found is the "watermelon stomach," but they have yet to do anything about it. I see a new gastro this morning, and hopefully he got his medical license at a real medical school and not thru a correspondence course.

If gastro problems/pain are common with EDS, how do they treat it? Or do they just say "well, it's the EDS" and then ignore it, leaving the patient in limbo with chronic pain?
deleted_user
deleted_user

I am not an expert on this or anything, but two things come to mind which might help - magnesium and mastic.

Our son was having a lot of trouble in the last few months with stomach upset, gas, burping etc. (He thought it was my cooking :( !) A little extra salt in his diet plus magnesium supplements seem to have calmed things down for him considerably. Both of those are recommended for EDS / POTS issues...

My husband has damage to his stomach lining from overuse of aspirin after a car accident twenty-five years ago, plus flare-ups from a hiatal hernia. He was taking all kinds of over the counter and prescription meds but was not really getting good results until we discovered mastic at the health food store. It is a plant resin which has been used since Greek and Roman times to soothe the stomach. Regular use of mastic allowed my husband to completely stop all other stomach medications and so forth. Now he only takes mastic if he has an occasional bad spell.

Both of these remedies shouldn't cause harm, and might help...
deleted_user
deleted_user

FRose: Thank you for taking the time to respond. I had my appointment this morning with yet ANOTHER new gastro, and although he's agreed to run the tests I want him to run, I hate that I'm the one playing doctor here. I also didn't like his attitude..... he feels overall that since I've had this problems for so long, that it's highly unlikely that they would ever find a root cause of it, so right up front he admits he has a defeatist attitude.

Now, I do take supplements because of the nutritional deficiencies that the Celiac Disease caused, and among them (of the really important ones) is magnesium. Since I've been taking this faithfully, I've noticed less muscle spasms overall, and rarely wake up with a stiff back.

The mastic I know nothing about, but am really interested in learning about it! If you can tell me more about I would really appreciate it - I am going to learn what I can from the internet too. Thanks!
deleted_user
deleted_user

Honestly, I don't know how mastic works aside from what I found on the internet as well. I think that the fact that it has been used for several thousand years is a good start. The form I have found at the health food store is a power in a gel cap, by the way. I think it may also be available in a form to chew like a chewing gum, but that was not what my husband used.

I just remembered another helpful natural stomach and intestinal aid - slippery elm, which has a sort of corn starch-like slickness to it for coating and soothing the system. We actually give to our kitty when she has occasional bouts of upset stomach or diarrhea, since cats have a specialized (primitive) digestive system that doesn't tolerate medicines and such as well as dogs or humans do. It also comes in gel caps. I hope these ideas help! :)
deleted_user
deleted_user

When I finally got my EDS diagnosis, I wrote the 20 some specialists I had seen in my HMO to tell the (politely of course) what they had missed all these years. ONLY one doctor knew anything about EDS and that was the gastro guy. I'm sitting here in terrible pain after over 12 hours in ER on Tuesday. I have a neck issue that makes me vomit..violently and long story short I tore my esphogus (no idea how that is spelled and too tired ot look it up) where it attaches to my stomach. They say it heals in 10 days, or else surgery. Not much to do for it, just let it heal. I will tell you after my brother dying of a stomach issue, when I laid in ER triage for 7 hours (5 hours without taking vitals) I did a bunch of soul serching (and a few recitings of my act of contrision..for those catholics out there). I hope your new gasto guy can help you in the future. There are some out there that know what they are doing. Unfortunately for my brother, none of them live in Lake Havasu, AZ where he died of sepsis from a bowel obstruction.