Gastrointestinal Concerns for EDS Patients

Dec 23, 2021 | Samantha Campbell | @samanthacmaa | Comments (11)

Bloating and Distension

Many patients with EDS report symptoms of being gassy, bloated or distended (these terms are all defined in the section below). These are often temporary sensations that occur after eating, go away on their own without any treatment, and do not require a visit to a health care professional.  For some EDS patients, however, abdominal bloating and distension are more chronic in nature, are quite bothersome and can negatively affect life on a daily basis.

Definition and Common Symptoms

Bloating is a sensation of gassiness (“I feel gassy”), trapped gas, or a feeling of being distended (this means that your abdomen or belly appears swollen) although there is no obvious visible distension or swelling of the abdomen. Patients frequently also describe a sense of fullness or pressure in the upper abdomen above the umbilicus (the belly button).  Abdominal distension describes a measurable change in the size of the abdomen.  Patients commonly describe how their abdomen enlarges so that they look “like a balloon” or look “like I’m pregnant.” Patients frequently report that bloating and distension worsen after eating and continue to worsen during the course of the day.  This is normal, to some degree, as specialized testing has shown that the size of the abdomen increases during the day in healthy volunteers, and then returns to baseline levels overnight.  Abdominal bloating and distension can occur as two completely separate processes although they frequently occur together. The diagnosis of bloating and distension is outlined below but generally involves taking a careful history, performing a physical examination, ordering simple laboratory tests, and using published medical guidelines.

How common is this problem?

Bloating is a very common problem. One survey of households in the United States found that 31% of adults – nearly one in three - had symptoms of gas and bloating.  A second large study of over 2,500 US adults, performed at a different time and using somewhat different questions, found that 16% - which is one in six adults – had symptoms of bloating. Bloating and distension can occur on their own without being associated with any other medical condition. However, these symptoms are more common in EDS patients and in patients who have irritable bowel syndrome (IBS), chronic constipation, gastroparesis (slow stomach emptying), celiac disease and dyspepsia. In general women are somewhat more likely to report symptoms of bloating than men, and patients who have problems with constipation are more likely to report symptoms of gas and bloating than are patients who have symptoms of chronic diarrhea. In our upcoming posts we will discuss more about causes, and treatments for bloating, so stay tuned!

Author: Brian Lacy, MD, PhD

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@momcooker

Hi. You have such wonderful information. Supposedly my Drs. here in TN know EDS however they don't seem to know how to improve anything including, of course, the bloating and distention. I bought the book you suggested and will bring up also the Pelvic physiothereapy and also look for a GI trained diatician who knows EDS. That all makes great sense to me but it won't be easy finding them. For exercise, I found Staibity Flow which is yoga specially directed at HEDS and EDS. Instead of the focus on flexibility they focus on muscles and strength. I may try that since my routines usually end up hurting me. Well, good luck in your treatment and please keep me updated. I will do the same.

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Hi @momcooker - Thank you so much for saying that. I'm sorry for the delayed reply, but it lifted my heart to know you it might help you. Chronic pain is so hard and isolating. I do really hope it helps. It can be pretty tough to find a GI dietician, but there are more who do telehealth now and can sometimes practice out of state. The RD I work with does telehealth with out of state clients. If you like, I can DM you her information. The thing is, she's an intuitive eating/health at every size dietician, and I know that's not necessarily everyone's cup of tea.

I also saw the post about Stability Flow. Have you tried it out yet? I saw she offers a free trial. I really enjoy yoga and Pilates--there are a lot of Pilates-trained instructors and PTs with good recommendations for EDS. Many of them even have EDS themselves. With yoga, I gravitate more toward mindful and not necessarily strength-based movement, but it's because with my chronic pain I'm not up to lengthier strength-based classes yet.

Good luck to you too with your treatment, and here's to moving forward, no matter what that looks like.

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