EDS: Severe GI Symptoms, Reduced Quality of Life

Hypermobile EDS Linked to Severe GI Symptoms, Reduced Quality of Life – by Jose Marques Lopes, PhD – September 12, 2018

I’m glad to read this and see that “it’s not only me” who has constant upsets in my guts. I was having these problems even when I was still in college, long before (30 years) I found out I had EDS.

Patients with hypermobile Ehlers-Danlos syndrome (hEDS) have an increased prevalence and severity of gastrointestinal (GI) symptoms, and use more potentially damaging medications than healthy people without the disorder, according to a new study.

Studies have reported frequent occurrence of GI symptoms in patients with connective tissue hypermobility, especially in patients with hEDS.

6 Health Problems with EDS

I posted this information in 2017, but I think it’s worth another look. It gives a good overview of what patients with this connective tissue disorder have to deal with.

Below is a collection of PubMed articles discussing 6 (there are many more) different medical problems that people with EDS have to deal with.

Most Important:
Problems with Local Anesthetic

Local anesthetic failure in joint hypermobility syndrome ; Alan J Hakim, Rodney Grahame, Paul Norris, and Colin Hopper; J R Soc Med. 2005 Feb;  – full-text PMC article

Human gut study questions probiotic health benefits

Human gut study questions probiotic health benefits — ScienceDaily – Sept 2018

Probiotics are found in everything from chocolate and pickles to hand lotion and baby formula, and millions of people buy probiotic supplements to boost digestive health. But new research suggests they might not be as effective as we think.

Through a series of experiments looking inside the human gut, researchers show that many people’s digestive tracts prevent standard probiotics from successfully colonizing them.

Furthermore, taking probiotics to counterbalance antibiotics could delay the return of normal gut bacteria and gut gene expression to their naïve state.  

Visceroptosis and the Ehlers-Danlos Syndrome

Visceroptosis and the Ehlers-Danlos Syndrome – X-rays – free full-text /PMC5773269/ – 2017 Nov

This is a detailed story, abundantly illustrated with abdominal X-rays, showing how the lax tissues of EDS may not be strong enough and can allow our organs to sink to the bottom of the pelvis. 

Click on the link to see the full study – the X-rays of this man’s abdomen are spectacularly scary.

The case of a patient with visceroptosis and Ehlers-Danlos syndrome hypermobility type (RDS-HT) is reported here. The literature on this unusual but probably under-recognized complication is reviewed.  

What patients should know about probiotics

Probiotics | American Gastroenterological Association  – retrieved June 2018

Probiotics are living, microscopic (very small) organisms that can help your gut health.

Most often, probiotics are bacteria, but they may also be other organisms, such as yeasts. Experts are still studying and sorting out exactly how probiotics work.  

What’s really behind gluten sensitivity?

What’s really behind ‘gluten sensitivity’? | Science | AAAS – By Kelly Servick – May. 23, 2018

This article explains the phenomena I’ve noticed: even people who do not have celiac disease often feel better when they stop eating gluten.

The patients weren’t crazy—Knut Lundin was sure of that. But their ailment was a mystery. They were convinced gluten was making them sick. Yet they didn’t have celiac disease, an autoimmune reaction to that often-villainized tangle of proteins in wheat, barley, and rye. And they tested negative for a wheat allergy. They occupied a medical no man’s land.

About a decade ago, gastroenterologists like Lundin, based at the University of Oslo, came across more and more of those enigmatic cases. “I worked with celiac disease and gluten for so many years,” he says, “and then came this wave.”  

New Wearable System to Monitor Gut Activity

Scientists Create a Wearable System to Monitor the Stomach’s Activity Throughout the Day – 27-Mar-2018 – Source Newsroom: University of California San Diego

Researchers have developed a wearable system to monitor stomach activity that performs as well as current state of the art methods but can be used outside of a clinical setting.

The system also comes with an app that allows patients to log their meals, sleep and other activities.

Folks like me with connective tissue disorders often have gastric problems due to the laxity of our innards. This often results in delayed gastric emptying and other malfunctions of the digestive system.  

A Tiny Tweak to Gut Bacteria Can Extend an Animal’s Life

A Tiny Tweak to Gut Bacteria Can Extend an Animal’s Life – The Atlantic – Ed Yong –  JUN 15, 2017

Most of the worms in Meng Wang’s lab die on schedule. They live their brief lives on Petri dishes, and after two to three weeks, they die of old age.

But some individuals beat the odds, surviving for several days longer than usual.These wormy Methuselahs were all genetically identical, so it wasn’t their genes that explained their decelerated aging. Instead, the secret to their longevity lay in the microbes within their gut.

This is part of a growing number of studies showing that an animal’s microbiome—the community of microbes that shares its body—can influence its lifespan.  

A New Diet Quickly Alters Gut Bacteria

A New Diet Quickly Alters Gut Bacteria – By Rachael Rettner | December 2013

This shows that diet can impact our health more quickly than many pharmaceutical drugs and gives us some power over our bodies.

The types of bacteria in your gut today may be different tomorrow, depending on what kinds of food you eat, a new study suggests.

In the study, participants who switched from their normal diet to eating only animal products, including meat, cheese and eggs, saw their gut bacteria change rapidly — within one

Management of Chronic Visceral Pain

Recommendations for the Management of Chronic Visceral Pain – Cindy Lampner –  July 05, 2016

The subjective experience of visceral pain and the neurobiological mechanisms that underlie it are substantially different from those of somatic pain, yet pain management strategies do not traditionally differ in their approaches.

As a result, the treatment of visceral pain frequently results in suboptimal outcomes and adverse effects on the GI tract.

Frequently diffuse, poorly localized and associated with autonomic and emotional reactions and alterations in visceral function, visceral pain is common across a range of clinical populations.