10 Signs that Someone with Ehlers-Danlos Syndrome (EDS) Needs to See a Dietitian

People with EDS often have GI symptoms

In addition to joint problems, many people with Ehlers-Danlos Syndrome often have gastrointestinal (GI) issues like acid reflux, chronic stomachaches, bloating, constipation, diarrhea, slow gastric emptying, vomiting, nausea…I could keep going!


These symptoms often lead people to trying anything to feel better. Unfortunately, this often leads to excluding more and more foods from the diet, hoping that taking things out will lead to feeling better.


Limited or restrictive diets have downsides

Sometimes, a person’s diet becomes so narrow that it’s very difficult to meet their energy, protein, and micronutrient needs. Plus, it affects their mental well-being when it feels like their only “safe” foods include just a handful of options.


In similar scenarios, people who experience GI unpleasant symptoms everyday or even multiple times per day often gravitate towards eating foods that are comforting or easy to prepare. Think toast, cereal, oatmeal, instant mashed potatoes, rice, etc. While it feels good in the short term, over time it can lead to not getting enough of the nutrients you need to feel better, just like in the previous example.


Navigate GI symptoms strategically and meet nutrition needs

The goal is to identify what’s causing symptoms that in turn affect food choices.


The real goal is to identify the specific problems that are causing these symptoms and address them strategically so you don’t have to exclude or avoid all the things that may or may not be making you feel worse. Of course, the other primary goal is to make sure you are meeting your essential nutrient needs through as varied a diet as possible, so your body has what it needs to function properly. Because what’s worse than adding iron deficiency anemia, protein deficiency, and B12 deficiency on top of everything else that’s going on?


Working with a dietitian who is knowledgeable about Ehlers-Danlos Syndrome can help you address your gastrointestinal symptoms and provide expert suggestions on how to get what you need while keeping your symptoms at bay.


Here is a list of 10 signs that someone with Ehlers-Danlos syndrome would benefit from working with a dietitian:


    1. You experience acid reflux after meals and can’t figure out what makes it better or worse
    2. Stomachaches keep you from going to school or work
    3. After meals you find yourself looking like you swallowed a balloon (with excess gas confirming this!)
    4. You struggle with going to the bathroom every other day, let alone every day
    5. Whatever goes in quickly comes out! Toilet paper is flying off your bathroom wall like it flew off store shelves in 2020
    6. You try to eat because you know you should be hungry, but after a few bites you feel full again
    7. Your nickname is “Vomit Comet” [this was actually my childhood nickname…there’s a good reason I pursued nutrition]
    8. Every morning you are greeted by a persistent wave of nausea that keeps you from wanting to eat breakfast
    9. You have removed more than several foods from your diet and now every plate looks almost the same
    10. You are beyond frustrated with feeling terrible all the time. You just want to feel better!



Do you experience one or more of these signs? Most of these issues negatively impact quality of life, making navigating life with a chronic illness even harder.


Working one on one with a dietitian may be the next best step for you. Click here to connect with me to learn more about how I can help.


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