Association between EDS and Gut Problems 

Thank you Dr. Aziz for this information. It’s very helpful for the EDS people suffering and thinking they’re crazy or a hypochondriac. There’s so much going on and so much to learn and Dr.’s like yourself put it into perspective and give those suffering piece of mind.

You have not idea how helpful this is thank you

Thank you so much for putting on this webinar. It has help me to understand why I am having so many issue with my GI system. I live in the US and we are not a advanced as the UK when it comes to EDS. I was just recently diagnosed with EDS Type 3.

Thank you! I have an EDS diagnosis but local gastro consultant insists there is no link between EDS and gastro issues 😥 getting worse year on year and I don't want digestion and reflux to get worse to the point of crisis before she listens! I wish all consultants knew more about EDS or my CCG would agree to fund me to UCL.

Who thumbs this down? There's good information here. Well thumb it down, be in denial and you or your loved one will suffer because of your attitude.

Is there any chance of getting a PDF of this slideshow to share with our GI?

I have EDS and Crohns. Horrible combo!

Thank you.

Fabulous thank you!

Healthy keto and lectin free diet healed my gut and after that my EHD🙏🏼. So, it is the other way around🍀

ty 4 this info.. i so appreciate it.. dealing with Crohns disease since age of 12 or so.. permanent ileostomy since 1991.. in 6 different locations on m abdomen since that initial surgery.. just recently figured out i have EDS as well and my daughter and grand daughter.. i am tryin to learn as much as i can.. sitting here with a terrible stomach ache.. im used 2 this.. :/

Very helpful ,thanks

Is there a link to an actual paper I assume this was part of the papers done? Because if I don’t get something in my hands to snap my docs out of their seeming outright refusal to understand this, I’m really not sure what’s going to happen to me. All I know is I’m miserable and I can’t imagibe living like this for years to come. Seriously, I refuse to believe there isn’t someone who can review this with me and come up with a plan to help me eat and know how to better handle my issues, which cause me unbearable situation. Something tells me if I just gave them this link they’d never actually bother to watch. Thanks.

thanks Lelly

I have EDS and severe Crohns. So this makes a lot of sense to me.

When is a feeding tube suggested?

Watching this while bloated feeling lol. I have to stop drinking carbonated drinks.

Why are we struggling to get the right doctor? Every doctor we talk to says these are not symptoms of EDS.

My EDS child has gastroparesis and constipation. Fallen down transverse colon sitting on uterus, small bowel loops bunched up in small pelvis - which is dismissed by radiologist and upon showing gastroenterologist dismissed as 'some have that'. NOW QUESTION: her pain is in one certain right lower abdo/pelvis spot (appendix out now, no change in pain), no ovarian cyst as it always easily would like to be blamed on, and it seems to get worse when eating nuts or quinoa and I really wonder why. Meat is anyway a no go. Every 'normal' movement (walking) or swimming make it worse for days and weeks (pain from 6/10 up to 9/10 unable to get out of bed). So....hm. Probiotics did nothing (changed different brands, mixes, even used bac.lateropsorus, e.c.1917), low FODMAP does nothing (in contrary, too many grains in it, lactase/fructase/maltase enzymes in gut mucosa normal anyway, no surprise there). So be careful with those general advices. I don't think they work for every EDS dislocated, malfunctioning intestine. Soft stool, yes, and still the pain just doesn't go below 6/10. I would love to have a non invasive MRI angiogram and venogram, to exclude squeezing or pooling, nope, not done because 'can't be'. I think there is nothing that can't be. Please be open minded everyone.

Thank you. Can you explain why I doctors seem to care about this. I tell a doctor and they roll their eyes. Its serious. I have been dealing with this for so long and it's taken it to get as bad as it has to get anyone to really start trying to figure it out. He asked me right before an endoscopy with ECRP. I have air in my biliary tree in my liver. I have a very bad rectocele. My son has Marfan syndrome. Is it common that this is genticallically transferred to one another via birth? Would Marfan and EDS be considered cousins? Neither of us have been genetically tested. I have had some blood work that came up negative but non conclusive. My son hasn't gotten anyone to do any testing. If him it's on the outside there are visible signs..