Got IBS? (or EDS with GI issues)

My stomach has never been my friend.  As I child, any emotion I felt was “felt” in my stomach.  First, I was diagnosed with “spastic esophagus” around 11/12yo (probably earlier), after numerous trips to the ER with debilitating stomach pain. After a lot of diagnostic testing, I was given the diagnosis of Spastic Esophagus (whatever that meant), told that I also had an ulcer, but it was improving and was sent on my way.

As a teenager, I learned that I couldn’t eat much at one time or if I did, I had to lie down due to complete discomfort and pain until the food digested some, but … I was hungry all the time from working out.  Being so hungry and then having a normal amount of food feel like a cement brick stuck in your stomach, definitely is a double-edge sword.

After I started dating my husband and discovering the wonderful cook that he mom was, it began a joke that after family dinners, I would go take a nap because I ate so much. My husband (boyfriend at the time) also learned how to “massage” my stomach, in order to help decrease the bloating and discomfort, enough so I could at least walk around. After we were married and I have my first baby, I was diagnosed with Ehlers-Danlos Syndrome.  And due to my complex life-long GI Issues, I saw a GI motility specialist who diagnosed with me Gastorparesis (ie. stomach paralysis).  My children also suffering varying degrees of GI issues, which why this an area that is almost painful (in an emotional way) to write about; however, this is life, my life and it’s real.

So many of with EDS have GI issues and symptoms and the reasons are plenty. And so many of us get misdiagnosed as have IBS and other issues, but yet almost all get overlooked for Ehlers-Danlos Syndrome or even Mast Cell Activation Syndrome, which is another comorbid condition with EDS. It’s estimated that approximately 85% of those with EDS have functional bowl disorders and it can greatly affect the quality of our lives.  Hence, why I stated “Got IBS? (or EDS with GI Issues)?”

The good news is that there is many things that we can try that have shown to improve some symptoms, but there is certainly not a “one size fits all” approach to how to “fix” GI symptoms and issues with those that have EDS.

Below, I’ve provided brief descriptions of 2 studies done on those with EDS and GI Issues, such has IBS, GERD, constipation and more.  In addition, I’ve also included a link to Dr. Heidi Collins’   Diet and Supplement Guidelines for Persons with Ehlers-Danlos Syndrome.

Study #1: Functional Digestive Symptoms and Quality of Life in Patients with Ehlers-Danlos Syndromes: Results of a National Cohort Study on 134 Patients

Ehlers-Danlos syndromes (EDS) are a heterogeneous group of heritable connective tissue disorders. Gastrointestinal manifestations in EDS have been described but their frequency, nature and impact are poorly known. We aimed to assess digestive features in a national cohort of EDS patients.

A questionnaire has been sent to 212 EDS patients through the French patient support group, all of which had been formally diagnosed according to the Villefranche criteria. The questionnaire included questions about digestive functional symptoms, the GIQLI (Gastrointestinal Quality of Life Index), KESS scoring system and the Rome III criteria.

Natural frequency of gastrointestinal manifestations in EDS seems higher than previously assessed. FBD and GERD are very common in our study population, the largest ever published until now. Their impact is herein shown to be important. A systematic clinical assessment of digestive features should be recommended in EDS.”

Study #2: Joint Hypermobility: A Common Association with Complex Functional Gastrointestinal Disorders

This study aimed “to evaluate the prevalence of joint hypermobility (JH) and comorbid conditions in children and young adults referred to a tertiary care neurogastroenterology and autonomic disorders clinic for functional gastrointestinal complaints.

Study design was a retrospective chart review of 66 new patients aged 5-24 years who fulfilled at least 1 pediatric Rome III criteria for a functional gastrointestinal disorder (FGID) and had a recorded Beighton score (n = 45) or fibromyalgia tender point score (n = 45) based on physician examination. Comorbid symptoms were collected and autonomic testing was performed for evaluation of postural tachycardia syndrome (POTS).

JH and other comorbid symptoms, including fibromyalgia, occur commonly in children and young adults with complex FGIDs. POTS is prevalent in FGIDs but is not associated with hypermobility. We recommend screening patients with complex FGIDs for JH, fibromyalgia, and comorbid symptoms such as sleep disturbances, migraines, and autonomic dysfunction.”

So what can we do to help provide some relief to our stomachs & decrease our symptoms?

Dr. Heidi Collins’ Diet and Supplement Guidelines for Persons with Ehlers-Danlos Syndrome is a great start.