Digestive problems in the hypermobile Ehlers Danlos Syndrome patient
Ross Hauser, MD.
At our center, we specialize in helping people with Ehlers Danlos Syndrome. If you have this diagnosis you know what it is, if you don’t, this is a disorder of the connective tissue which can cause among other problems of “being double-jointed,” and the “hypermobility,” of the joints causing frequent dislocations and subluxations (partial dislocations). At our center, we help these people with Prolotherapy injections, which will be explained below. These injections can strengthen their joint and spinal ligaments to help hold everything in place.
In the context of this article, we are going to explain how these injections can help hold the cervical spine vertebrae in place and possibly eliminate or alleviate the numerous symptoms that these people suffer from.
In some of the sample stories below, you will see that many people mention a diagnosis of Ehlers Danlos Syndrome. We will also see what else they discuss. Some of these stories may sound very familiar to you.
I have Ehlers Danlos Syndrome I think my vagus nerve is the problem
I have a diagnosis of Ehlers Danlos Syndrome, Mast Cell Activation Syndrome, and numerous digestive disorders. The reason I think it is my vagus nerve is because of the countless hours I have spent researching my problems online and because of the number of questions I have been asking anyone who I think can help me.
Here is my situation as it relates to my SIBO. I am always bloated. I have been constipated for what seems like years. I cannot remember the last time I had a good bowel movement. I don’t digest anything. I have Amenorrhea. I can’t remember having a period. I have inflammation along my digestive tract and I have inflammation in my joints. I do not sweat or I sweat too much. I have a racing heart rate that I would like to lower. I have a lot of pain and my mind “is not right.” All this leads me to believe that I have issues with my vagus nerve. My research has lead me to believe that I am not pushing my food down my digestive tract, it is getting stuck or backed up. I think this is causing the bacteria to build up in my small intestine. I think I need to make my vagus function better.
Below we will discuss these very problems of backed up food and clogged routes and valves the food cannot pass through.
It started with Ehlers Danlos Syndrome and it got worse after a car accident
I have a lot of joint disease, osteoarthritis from hEDS (Hypermobile Ehlers-Danlos syndrome). I have had a few surgeries to help with the chronic joint dislocations. I have been involved in more than one auto accident. While this has caused significant pain and issues in my shoulder and neck, it is also causing me GI issues which I now consider the worse of my symptoms and the symptoms that I want to be treated as a priority. My symptoms include excessive gas, uncontrollable belching, the sensation of air being stock in my chest and abdomen. I have a diagnosis of GERD, bowel transit, and GI motility issues. As for my SIBO, I did get some relief from my antibiotics but the symptoms come and go and I am on and off the antibiotics more than I care to be at this point. I have changed my eating habits to accommodate these problems. I feel that I have a problem with foods fermenting in my gut.
Ehlers Danlos Syndrome and neck instability. All I do is make gas
For as long as I can remember I have been double-jointed. I was suspected to have hEDS but a true diagnosis could not be made until I got older. Over the years I got a lot of relief from chiropractic care. But as the years passed my neck and upper back were becoming big problems. My cervical spine would “pop,” “click,” and then feel like it had slipped out of place. I then went to a posture specialist. That helped a little. As I was having problems with TMJ, I was given an appliance that would help me keep my neck and jaw in place. Unfortunately, my problems continued and progressed and became more severe.
Besides Ehlers-Danlos Syndrome, I was also diagnosed with Postural Orthostatic Tachycardia Syndrome. I was told to consider cervical fusion surgery. I have heard some people do very well with this procedure. I am scared and concerned that if the surgery is not a success that I will be worse. As my neck problems worsened so did my digestive problems. My stool does not move in my colon, I have terrible almost non-existent bowel transit. Not only do I have SIBO, but I also have SIFO (small intestinal fungal overgrowth.) I am so bloated. I am bloated all the time. It seems all I do is make gas. I am being treated for Celiac Disease as well and I am on all sorts of modified and rotational diets.
Ehlers Danlos Syndrome, Lyme Disease and digestive problems
I was diagnosed with Lyme disease. This lead to a diagnosis of Ehlers Danlos Syndrome. My doctors are not sure when the EDS showed up, before the Lyme Disease? After the Lyme Disease? This started my journey of confusing diagnoses. My doctors were looking for clues in my neck pain. Was the neck pain and now new neurological and digestive symptoms from the Lyme Disease? Did I always have these problems but now they were made worse by Lyme Disease? I did suffer a concussion and whiplash injury before the Lyme Disease diagnosis. Now I have SIBO, food sensitivities, and bowel problems. I am looking for a path to recovery.
Gastrointestinal Manifestations in Joint Hypermobility Syndromes
In 2018, doctors at Texas Tech University gave a definition and understanding of various disorders linked with Joint Hypermobility Syndromes, including gastrointestinal problems in the patients with Ehlers-Danlos syndrome (hEDS) and benign joint hypermobility syndrome (BJHS/JHS). Their paper was published in The American journal of the medical sciences.(1) Here is what they wrote:
“. . . in a subset of individuals joint hypermobility causes a range of clinical problems mainly affecting the musculoskeletal system and, to a lesser extent, extra-articular disorders. Joint hypermobility often appears as a familial (inherited) trait and is shared by several inherited connective tissue disorders, including the hypermobility subtype of Ehlers-Danlos syndrome (hEDS) and benign joint hypermobility syndrome (BJHS/JHS).
Although joint hypermobility has primarily been thought of as a rheumatological disorder, increasing evidence shows significant associations between both hEDS and BJHS with specific extra-articular disorders. To date, the strongest associations of these 2 conditions are with anxiety disorders, orthostatic tachycardia, various functional gastrointestinal (GI) disorders and pelvic and bladder dysfunction.”
Joint hypermobility syndrome (JHS) was diagnosed in 55% of functional dyspepsia patients
A November 2020 paper in the journal Clinical and translational gastroenterology (2) wrote: “Recent studies demonstrated that joint hypermobility syndrome (JHS) is strongly associated with unexplained dyspeptic symptoms in patients attending gastrointestinal clinics. In this study the doctors “aimed to study the relationship between symptoms, gastric sensorimotor function, and joint hypermobility syndrome (JHS) in functional dyspepsia patients.”
Patients who were being treated by specialists for functional dyspepsia and who underwent a gastric barostat study and a gastric emptying breath test were recruited for assessment of JHS.
- A total of 62 functional dyspepsia patients (68% women, average age 44 and with a body mass index considered in the range of “health weight”) participated in the study.
- Joint hypermobility syndrome (JHS) was diagnosed in 55% of functional dyspepsia patients.
Please see my companion article: Functional dyspepsia (indigestion) and irritable bowel syndrome caused by cervical spondylosis
A FODMAP Diet helps patients with Joint hypermobility syndrome more than patients without Joint hypermobility syndrome
A FODMAP is an acronym that stands for fermentable oligosaccharides, disaccharides, monosaccharides and polyols. The acronym describes foods that are short-chain carbohydrates (sugars) that are poorly absorbed in our bodies at the small intestine. People are put on a FODMAP diet to eliminate these foods as a means of reducing symptoms associated with irritable bowel syndrome (IBS) and/or small intestinal bacterial overgrowth (SIBO).
Some of the foods that your health care professional may suggest you avoid are: Milk based dairy, wheat, some fruits and vegetables. It is not a simple as that however and as with any elimination diet a customized program should be discussed with your health providers.
In 2019, doctors writing in the journal Gastroenterology research (3) wrote: “The low fermentable oligosaccharide, disaccharide, monosaccharide and polyol (FODMAP) diet causes significant clinical improvement in patients with irritable bowel syndrome (IBS). Joint hypermobility syndrome (JHS), defined as musculoskeletal symptoms in a hypermobile individual in the absence of systemic rheumatological disease, may be associated with functional gastrointestinal symptoms, including IBS. The aim of this study is to examine whether JHS can affect the response to the low FODMAP diet in patients with IBS.”
What the study team did then was to assess 165 patients (130 females, average age 44.)
- Diarrhea predominant irritable bowel syndrome was present in 40.6% of the patients while JHS was present in 21.2%.
- The score for abdominal pain was higher for JHS compared to non-JHS prior to intervention.
- Symptoms improved in both groups of patients after a low FODMAP diet. The largest effects were shown with significant decreases of the average (pain) score and bloating.
- When broken down by Joint hypermobility syndrome and IBS type, a low FODMAP diet significantly improved pain, bloating, diarrhea, and constipation
- This study suggests that a low FODMAP diet has a greater effect on irritable bowel syndrome symptoms in Joint hypermobility syndrome than non-Joint hypermobility syndrome patients.
Digestion & the Vagus Nerve: Sphincter function and related symptoms affected by neck instability
Ross Hauser, MD discusses digestion and the vagus nerve as it relates to the sphincter function. In the histories of patients who we see in our center, they often feel like they hit a wall with regard to finding resolution of symptoms or their digestion conditions because the focus has been too narrow. When looking at many digestive symptoms through the aspect of vagus nerve health, many times solutions can be found because the vagus nerve innervates many vital digestive organs. Thus, in our center, we find that patients who have digestive complaints as part of their constellation of symptoms that also point to vagus nerve impairment, that the upper cervical area and cervical curve should be analyzed and examined to see if this could be the cause of the issues.
Summary and contact us. Can we help you? How do I know if I’m a good candidate?
We hope you found this article informative and it helped answer many of the questions you may have surrounding Craniocervical Instability, upper cervical spine instability, cervical spine instability, or simply problems related to neck pain. Just like you, we want to make sure you are a good fit for our clinic prior to accepting your case. While our mission is to help as many people with chronic pain as we can, sadly, we cannot accept all cases. We have a multi-step process so our team can really get to know you and your case to ensure that it sounds like you are a good fit for the unique testing and treatments that we offer here.
1 Botrus G, Baker O, Borrego E, Ngamdu KS, Teleb M, Martinez JL, Maldonado III G, Hussein AM, McCallum R. Spectrum of gastrointestinal manifestations in joint hypermobility syndromes. The American journal of the medical sciences. 2018 Jun 1;355(6):573-80. [Google Scholar]
2 Carbone F, Fikree A, Aziz Q, Tack J. Joint Hypermobility Syndrome in Patients With Functional Dyspepsia. Clinical and translational gastroenterology. 2020 Nov;11(11). [Google Scholar]
3 Fragkos KC, Keetarut K, Cox A, Eady J, Emmanuel AV, Zarate-Lopez N. Joint hypermobility syndrome affects response to a low fermentable oligosaccharide, disaccharide, monosaccharide and polyol diet in irritable bowel syndrome patients: a retrospective study. Gastroenterology research. 2019 Feb;12(1):27. [Google Scholar]