Updated: May 13, 2022
In this post, we'll cover
Why people with Ehlers-Danlos Syndrome may not be eating enough protein
As a Registered Dietitian Nutritionist (RD) who works with patients diagnosed with Ehlers-Danlos Syndrome (EDS), I know how common it is for patients to struggle to meet their protein needs.
It's possible that over 50% of the patients diagnosed with EDS also struggle with frequent abdominal pain, nausea, chronic constipation, acid reflux, and/or irritable bowel syndrome-like symptoms. Let's face it - when we don't feel well, we don't eat well. And that's exactly what I see in my practice every day.
Symptoms like stomachaches and nausea often lead to poor appetite, making it hard for people to eat enough food throughout the day. When we don't eat enough food, it's also very challenging to meet our protein needs.
Acid reflux and digestive discomfort from irritable bowel syndrome-like symptoms often lead people to removing foods from their diets in hopes of feeling better. But when too many foods (or the wrong foods) are removed from the diet, there may not be enough protein-rich foods left.
The downsides of consistently not eating enough protein
Guess what collagen is made of? Amino acids. Guess where we get essential amino acids from? From the protein in the food we eat.
Unfortunately, there are no studies to date that illustrate how protein intake affects collagen quality in people with EDS. However, we can at least do the bare minimum by meeting our bodies' protein needs so they have the right amount of building blocks necessary to do
their best at making collagen.
In other patient populations, we know that not meeting protein needs can lead to with poor skin integrity, slow wound healing, increased infection severity, and muscle wasting. Patients with EDS likely can experience the same. But like mentioned previously, it's unknown how not eating enough protein affects our bodies' ability to make collagen.
How much protein do people with Ehlers-Danlos Syndrome actually need?
Currently, there is no evidence that suggests people with EDS need different amounts of protein relative to people who don't have EDS. This means that the same equation is used to calculate how much protein people need no matter if they have EDS or not.
However, people may need different amounts of protein if they currently have a fever or infection, are healing from an injury or procedure, have a kidney condition, or are younger than 18 years old. A dietitian is the best person to help you calculate how much protein you currently need based on your health, lifestyle, and personal health goals.
For people who are above 18 years old, are moderately active, and not healing from any injury, here's how to calculate how much protein you should be getting daily:
Divide your current weight in pounds by 2.2 kilograms
(example: 120 pounds / 2.2 kg = 54.54kg)
Next, multiply your weight in kilograms by 0.8g/kg
(example: 54.54kg * 0.8g/kg = 44 grams protein)
Repeat the step above and multiply your weight in kilograms by 1.0g/kg
(example: 54.54kg * 1.0g/kg = 55 grams protein)
This means that someone who is 120 pounds should be getting a minimum of 44-55 grams protein daily.
5 fun ways to include more protein in the diet
Even though EDS can impact what, how much, and when people eat, protein needs still need to be met on a daily basis. Here's a list of a few different ways to include high protein foods in the diet that are a little more exciting than plain chicken or a protein shake. Pick one or two ideas that sound like they will work best for you. Need more ideas and tailored suggestions? Make an appointment with me.
1. Protein popsicles
Protein popsicles are an easy and delicious way to get in a high protein snack. There are two different ways you could make them:
Homemade option: Blend your favorite flavor of protein powder with milk, yogurt, frozen fruit, or nut butter. Pour the smoothie mixture into molds and freeze.
These are perfectly customizable and the flavor options are endless. Plus, a drizzle of chocolate sauce on top never hurt anyone.
2. Protein Pancakes
Enjoy a balanced breakfast with protein pancakes! Pancakes, fruit, and nut butter...sounds delicious right? Similar to above you can take the shortcut or make your own. Choose your own adventure.
Store bought option: high protein pancake and waffle mixes can be found at most grocery stores, including Target! Birch Benders, Kodiak, and Bob's Red Mill are just several of the brands that now offer high protein mixes.
Make sure to double or triple the batch so you can store leftovers in the freezer! Then your next breakfast is a just a quick microwave trip away.
3. Bean Snacks
Some snacks pack crunch, but no protein. These, on the other hand are the total package. You can purchase deliciously seasoned bean snacks or make crunchy chickpeas at home.
Homemade option: Try this recipe from The Ktchn
Besides protein, beans are also rich in fiber. If you (and your gut) are not used to eating beans, keeping the serving sizes small at first so you avoid GI discomfort.
4. Egg Bites
Egg bites are essentially the mini version of quiche. Sous vide egg bites seem to be quite popular (sold at grocery stores and Starbucks!) but making them at home in a muffin pan is a great option too.
Store bought option: Vital Farms, Veggies Made Great, Eggland's Best, Organic Valley, and Three Bridges are just a few of the brands that have egg bite products available at popular grocery stores including Target.
Homemade option: make your own egg bites by pouring whisked eggs and finely chopped veggies to a greased muffin tin and baking until fully cooked. This recipe for Easy Oven Egg Bites sounds delicious!
Egg bites make a great snack or can add a protein boost to any meal. Perfect for when you're after something savory and satisfying. Don't eat eggs? Try using Just Egg instead!
5. Bean-Based Pasta
I saved the best for last! Bean and lentil based pasta pack some serious protein (plus iron and fiber!). Luckily, they're available at almost every major grocery store and can be an inexpensive way to make a protein packed plant-based meal.
Store bought option: Explore Cuisine, Banza, and Barilla are a few of the brands that sell bean-based pastas at grocery stores like Target, Safeway, Sprouts, etc. Other stores like Trader Joes and Jewel Osco also have store brand options.
There are many different types of bean-based pastas. They can be made from soy beans, chickpeas, lentils, or black beans. Many people tend to prefer chickpea flour based pastas because they have the mildest flavor.
See, getting enough protein can be fun and delicious!
While it can be challenging for some people with EDS to meet their protein needs because of poor appetite or GI discomfort, there are ways to add protein-rich foods to the diet to get the most protein bang for your buck. From popsicles to pasta, there's room to boost protein intake at any time of day. Which one are you going to try first?
If you struggle with symptoms like frequent stomachaches, bloating, acid reflux, fatigue, poor appetite, or nausea, be sure to send me a message to see if working together is the next best step in your healthcare journey.