Protein Intake and Ehlers-Danlos Syndrome

Most types of Ehlers-Danlos Syndrome (EDS) are caused by defects in collagen – the most abundant protein in the body.


Do people with EDS need more protein?


Unfortunately, there have been no studies that directly investigate Ehlers-Danlos Syndrome patients’ protein needs. According to our current understanding, people with EDS probably do not need to consume more protein simply because they have this condition. The same goes for collagen supplementation as well – current (also sparse) evidence does not indicate any significant benefit.


Why might people with EDS feel better when they add in more protein and/or collagen supplements into their diet?


They probably were not meeting their protein needs to begin with.

In my professional experience, very few patients with other diagnoses struggle with meeting their daily protein needs. However, many EDS patients do seem to have issues with getting enough protein. This could be for many reasons, but is typically related to poor appetite, eating a restricted diet, avoiding foods that are not easy on the stomach, and choosing easy to prepare items.


Quick nutrition 101 lesson

Protein is an important component of the diet. Proteins are made up of chains of amino acids, and while the body can make some of the amino acids it needs, it can’t make all of them. That’s why we need to consume foods with the essential amino acids. Otherwise, our bodies can’t make the proteins they need to carry out thousands of functions, including making collagen. Unlike fats and carbs, our bodies cannot store extra protein for later. This makes it necessary to consistently eat enough protein on a daily basis.


How much protein do you need?
    • Take your weight in pounds and divide it 2.2 kilograms


Ex. 150lbs/2.2 kilograms = 68.2 kilograms

    • Next, multiply your weight in kilograms by 0.8 and 1.2 grams/kilogram


Ex. 68.2 kilograms* 0.8 grams/kilogram = 55 grams


68.2 kilograms * 1.2 grams/kilogram = 82 grams


This tells us that someone who weighs 150 pounds needs at least 55 grams of protein daily to cover their body’s basic needs. If this person is fairly active, is in the process of losing weight, or is currently healing from a minor injury, they would need at least 82 grams of protein daily. Some individuals require more, especially if they recently had surgery or have an infection.


So, it’s no surprise when people who are not getting enough protein from their diet start to feel better when they add in a new collagen supplement or protein powder.


Patients with Ehlers-Danlos Syndrome need to meet or exceed their protein needs


The objective is for patients with EDS to meet or exceed their protein needs each day, and this can be accomplished through food alone or with some extra help. Protein powder and a variety of other protein rich options (collagen supplements, protein shakes, etc.) are great ways to boost overall intake throughout the day, especially if someone struggles with a poor appetite, early satiety, or does not eat meat.




In summary, patients with EDS need to consume enough protein to meet their bodies’ daily needs, but probably don’t need to consume much more protein than the average person. However, it’s common for things like poor appetite and other issues to prevent people from consuming enough. This is when protein supplements can help bridge the gap, and may help people feel better if they were not eating enough protein to begin with.


Are you struggling with eating enough protein? Working with a dietitian can help. Click here to learn more about my EDS Nutrition group program.

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