Eating healthy has been incredibly important to me since I was a kid. I think it is safe to say that growing up on canned and microwave food, as well as eating nothing but bologna & cheese roll-ups with mustard and mayonnaise had nothing to do why proper nutrition plays such an integral role in my life now. Nope. None.at.all.
Oh, I forgot the Chunky Chicken Noodle Soup from a can that I learned how to microwave for myself at age three years old also. Pure processed, sodium filled goodness.
But, I survived. I think …
My parents separated when I was very young, and my mom was the typical working, recently divorced single mom. My mom was a manager for the old Crown Books bookstore chain, then became district manager and was exhausted all of the time. She was overweight my entire life until she became sick. My mom also loved her food. As a former smoker and alcoholic, my mom replaced one unhealthy addiction with another. My Gram, my mom’s mom, lived with us from the time I was in third-grade until I was in high school, but she was usually as exhausted as my mom. In previous posts, I’ve discussed what it was like being around two women who I loved very much;h however, neither my Gram or my mom cared much about taking care of themselves. So, why would they care so much about taking care of me? Sure.. they loved me, but taking care of me required effort and energy — a difficult task when you were so exhausted. And cooking meals for me was taxing. Hence, why I lived off of anything I could make for myself. I felt frustrated and lonely. I longed to be cared for and wanted my Mom and Gram to be healthy, even if it was just because they loved me.
Looking back, they both had undiagnosed Ehlers-Danlos syndrome, so my perspective now is a bit more understanding. Even still, I feel very passionate the importance of proper nutrition and the role it plays in your overall health and wellness. Providing the healthiest food we can for our children, is one of the best ways we can show our children that we love and care for their health. Don’t get me wrong; I have to face the healthy food battle every day with my kids, but they are learning the differences between how they feel after eating good food, versus how they feel when after eating no so good food.
It’s important to point out that I am not solely referring to junk food vs. non-junk food. Mostly, I’m referring to processed food, versus fresh, not-from-a-box food. There’s a big difference.
The question about what to eat when you have EDS (or what CAN we eat that doesn’t make our stomachs upset) is one that comes up often. Why? Because we are all different, but most of us deal with GI Issues (approx. 85% of those with EDS have GI issues). Unfortunately, what works for one person, will probably not work for the next. Have a said that before? There’s not one “diet” that provides the magic pill for all of us, but there are a few guidelines that have proven helpful for many of us.
To break the nutrition thing down into a few key points to focus on and learn from, I have compiled my top 10 nutrition tips and resources for optimal health when living with EDS. Because there’s so much that can be written on nutrition, the importance of good bacteria in our stomachs, what happens if when we don’t have it and how many conditions can be linked to the health of our GI tracks, it’s best to start simple and build knowledge step by step.
My top 10 nutrition for EDS building blocks of knowledge are below:
1. Watch Dr. Heidi Collins’ presentation from the 2014 EDNF Conference, ‘If you cannot connect the issues, think connective tissues.’ – You will gain a much better understanding of EDS in general, how EDS can affect the entire body because connective tissue is everywhere, and how our GI tracts are affected by connective tissue dysfunction.
2. Read through Dr. Heidi Collins’ presentation from the 2014 EDNF Physician’s Conference, ‘Gastrointestinal Complications of Ehlers-Danlos Syndrome.’ – Dr. Collins’ presentation provides a very thorough description of how dysfunctional connective tissue (i.e. in a connective tissue disorder like Ehlers-Danlos syndrome), can lead to the various GI ailments so many of us live with daily. Dr. Collins also links together the why and the how gut flora plays such a critical role in the proper function of our GI tracts, even if built impaired.
Many factors can hinder the role of the good bacteria that is in our GI tracts — medications, foods that are hard for our systems to process and stress, are a few of the main culprits.
In her presentation, Dr. Collins quoted the NIH study ‘Gastroesophageal reflux and irritable bowel syndrome in classical and hypermobile Ehlers-Danlos syndrome (EDS)’ by Drs. Francomano and Levy. In this study, the researchers concluded that,
“EDS patients may have chronic pain, leading to NSAID-induced gastritis mimicking GERD or narcotic-induced symptoms mimicking IBS. Alternatively, EDS may cause reduced lower esophageal sphincter tone, increased distensibility, and/or decreased GI motility, resulting in GERD and/or IBS. Autonomic dysfunction could cause both GERD and IBS. 10 patients had suspected or confirmed cardiovascular autonomic dysfunction; 9 also had GI complications.
Additionally, in the NIH study ‘High prevalence of Food Allergies in Patients with Ehlers-Danlos Syndromes’, Dr. Collins highlighted the results which stated, “Collagen abnormalities may cause mucosal lesions, altering tissue integrity and increasing the chance of larger proteins crossing the mucosal barrier and creating an immunogenic response. Multiple studies have correlated eosinophillic gastrointestinal disorders, allergic responses that fall in between IgE and TH2-type responses that are mediated by IL-5 and other eotaxins, with classic mast cell tissue degranulation, producing gastrointestinal disorders similar to those seen in our patients.” We conclude that GERD and IBS are common complications of classical and hypermobile EDS, and should be sought and treated in these patients.”
So, what do mast cells have to do with EDS and GI issues? Our mast cells are our allergy cells, and mast cells live in our connective tissues. In our GI tracts, this specifically refers to the mucosa. The mucosa is the inner lining, the protective barrier that inhibits toxins from the interior of our GI tracts from entering into our peripheral blood. And this protective lining covers the entire length of our GI tract, beginning with our mouth and ending at the anus. If the mucosa becomes dysfunctional, a wide variety of problems can occur — inflammation, irritation, and allergies. That’s just the beginning.
The complexity of gastrointestinal issues and how they can be linked back to connective tissue disorders like Ehlers-Danlos syndromes, and allergy and inflammatory disorders such as Mast Cell Activation Disorders, is far too involved to break down in one blog post. My plan is to continue to share information one post at a time that compiles literature and information on both types of conditions and their probable overlaps. Writing on conditions related to GI dysfunction and the importance of proper nutrition for those of us with Ehlers-Danlos syndrome (EDS) and Mast Cell Activation Syndrome (MCAS), really just scratches the surface of how involved these conditions are. It certainly demonstrates why EDS and MCAS are considered multi-systemic conditions. Even still, taking the time to understand the biological reasons why nutrition plays such a critical role for us, is a valuable resource that patients can so easily learn and utilize. Patients can then apply what they learn to improve their overall health and wellness while living with a chronic illness(es).
To read more about the link between mast cells and GI dysfunction, read here.
3. Read The Whole 30 and It Starts With Food: Discover the Whole30 and Change Your Life in Unexpected Ways – two books that will change your life and the way you view the food you eat. While these books follow the basic principles of the Paleo diet, they mainly focus on the science and cellular biology of how food is broken down in our bodies. This is something that each person, EDS or not, should understand. Additionally, both books dive much further into how the food we eat affects our hormones, why sugar is so addicting and much more. It’s eye-opening.
4. Read and print Diet and supplement guidelines for persons with Ehlers-Danlos Syndrome, by Dr. Heidi A. Collins – Dr. Collins provided her published set of recommendations for those looking for nutritional and supplement guidelines for gastrointestinal problems and nutritional deficiencies associated with Ehlers-Danlos syndrome. This document is an incredible resource for all patients and helps us understand Dr. Collins’ passion for proper nutrition for EDS. Click – Diet and supplement guidelines for persons with Ehlers-Danlos Syndrome to access link again.
Additionally, there was an article published back in 2005 that proposed nutritional guidelines for those with Ehlers-Danlos syndrome(s). This article was based on the authors’ medical hypotheses, versus on document medical research. It should not be viewed as a directive or exact guidelines for those with Ehlers-Danlos syndromes, but more as an interesting tidbit of information. However, the importance of adequate nutrition and the plausible link between nutrient deficiencies and Ehlers-Danlos syndromes was evident even back in 2005.
5. Consider getting a blender or a juicer – Those with EDS tend to have slower digestion and problems absorbing nutrients (AKA – malabsorption). Liquid or pureed food is an excellent way to solve two EDS problems with one drink. Personally, we have a blender and a juicer at home that we use (see links below)
6. Drink/eat Kefir (AKA – “pro-bug” according to my children) or another complete probiotic daily, such as Kombucha. – Adding kefir and natural probiotics to our diets single-handedly changed the various GI ailments that my family deals with on a daily basis. Adding Kefir into the regular foods my children eat, per a recommendation by Dr. Collins a few years ago, has been life-changing — specifically for my oldest son. He even wrote about it in Our Stories of Strength – Living with Ehlers-Danlos Syndrome. Kefir is 99% lactose-free, but for those who do not tolerate any lactose or fermented foods, there are other complete probiotics available. Also, you can grow your water kefir grains or use Kombucha. Foods with probiotic properties are Sauerkraut, Kimchi, Miso, Pickles, Yogurt, etc. (Dr. Collins gives a full list in her guidelines).
7. Hydrate properly – It is no surprise that proper hydration and drinking water is critical for everyone’s health. It is also widely known that those with EDS also have issues with Dysautonomia, specifically POTS. Dysautonomia and POTS are conditions caused by dysfunction of the autonomic nervous system, and both can be linked back to malabsorption and GI issues stemming from EDS or MCAS.
One of the primary treatment protocols for POTS is hydration with salt. Many people use NUUN electrolyte tablets or other electrolyte tablets with water. Additionally, for those with MCAS, receiving IV fluids has been found to help calm symptoms and reactions. Refer to TMS’ Emergency Care for Mast Cell Disorders for more detailed information. To read about various causes of Dysautonomia, go here.
8. Limit Sugar to only naturally occurring sugars – Ex. Honey, Molasses, Coconut Sugar, Cane Sugar, etc. Naturally occurring sugars do not include Stevia or Agave. Again, a full list can be found in Dr. Collins guidelines.
9. Limit Gluten – Limiting gluten or eating gluten-free does not have to cost a ton, nor does it mean that you can only shop in the gluten-free aisle. It takes work and I’m certainly not perfect at it, but it can make a huge difference.
10. Eat real food – Real food means food, not from a box and includes most of the already prepared and frozen foods. Real food comes from the ground, is grown with little chemicals and includes animals fed properly. Real food is fresh, made from scratch or is raw. Raw doesn’t always mean uncooked. Fruit is raw. Vegetables not cooked are raw. Nuts that have not been roasted and salted are raw. Raw usually refers to the idea that food comes from the ground and goes right to the dining table, without some elaborate prep method that can strip many foods of the powerful nutrients we need. Eating raw also does not mean that you should not rinse your food before eating it. It means limiting the chemicals used to grow it, as well as those used in various treatment protocols to prepare it for sale or consumption.
Gluten is not a real food, nor is anything in a box. Gluten cannot be grown on its own, nor is it self-sustaining. The same goes for many of the mainstream foods that we eat. These are usually the questions that I ask myself – Can I grow this food? Can I make this food myself without the help of high-tech machinery and made-made chemicals? If the answers are no, then it is not real food. What does this mean for me? This means Nutella is not real food. I may cry now.
Eating raw meat or fish can pose potential health risks, but many people eat raw fish and meat, such as sushi just fine. You have to make the right decision for your health. Many people cannot take the risk with raw food for health reasons. If that is the case, there are many ways to prepare fresh food to preserve its nutrients, but minimize any potential health risks of eating raw.
Doing your due diligence on where your food comes from and who is preparing it, is key.
Finally, while this is not a complete list of all nutrition tips and resources for those with EDS (and MCAS), these are the top 10 tips and resources that I often share with patients. My goal is always to help people build a fundamental understanding of why nutrition is so important for those of us with EDS, MCAS, and all other chronic conditions. And to develop a basic understanding, you have to start with simple biology.
– Dr. Heidi Collins’ Diet and supplement guidelines for persons with Ehlers-Danlos Syndrome
– EDNF’s 2014 Physicians Conference – Dr. Collins’ Presentation Slides: ‘Gastrointestinal Complications of Ehlers-Danlos syndrome’
– EDNF 2014 Learning Conference – Dr. Collins’ ‘If you cannot connect the issues, think connective tissues.’
Additional Medical Publications & Research Articles (Several more publications are available. Links will be updated be soon!):
– EDS Wellness’ 2016 Article: ‘Mast Cells, Ehlers-Danlos syndrome, and GI Disorders’
– Dr. Heidi Collins’ Diet and supplement guidelines for persons with Ehlers-Danlos Syndrome
– HMSA’s – ‘Bowel in JHS & EDS’ (2013)
– EDS Awareness’ Post ‘Nutritional, Therapeutic Strategy for Ehlers–Danlos Syndrome’
Video Recordings & Presentation Slides:
– Wellapalooza 2017 – Dr. Jyothi Rao’s presentation on The Role of Nutrition in Healing & Gut Microbiome (Presentation recording will be uploaded soon! Please contact Dr. Rao’s office directly for presentation slides)
– EDS Society’s 2017 Learning Conference – ‘Dr. Heidi Collins – Diet and Supplementation for Persons with EDS’
– Wellapalooza 2015 – Dr. Telfair Presentation on Integrative Approaches to Managing Chronic Illness Video Clip 1(Dr. Telfair’s presentation slides & full video recording are available upon request. Please email firstname.lastname@example.org)
– TCAPP’s 2013 Think Tank – Dr. Collins’ ‘How Ehlers-Danlos Syndrome Affects Digestion, Nutrition, Bowel Function, and Gut-Related Immune Function’
Nutrition Resources & Links:
– Gouter (only in the Washington, DC area) – fresh juices mixed with alkaline water. Personally, I like the taste of alkaline water better than regular water. I also feel that drinking alkaline water settles my stomach and decreases any reactions stemming from GI issues associated with EDS and MCAS (i.e. IBS, Gastroparesis, etc.). However, Gouter does not ship and is not sold in stores outside of the DC area, but the principle behind the tonics can be applied at home with a good juicer.
– Philosophie Super Foods – another IG friend and raw vegan chef, who makes incredible super foods that contain all the nutrients, but no of the extra stuff. Sophie also blogs about new recipes, life, yoga and has an excellent YouTube channel. She is a great resource.
– Alkaline vs. Acidic foods and water – page from my website
– The Kangan System & other Alkaline water systems such as The Aqua Ionizer – while we drink alkaline water at home, and it’s used in the tonics by Gouter that I drink, I do not sell the Kangan System or another alkaline water system. There is a lot of science behind why alkaline water is thought to be better for you; however, the mainstream medical community has not backed these claims. You have to find what works for you. The point is to stay hydrated with proper electrolytes – alkaline water or not.
– Healing Histamine with Yasmina – health and nutrition blogger, who shares low-histamine, anti-inflammatory recipes and discusses various issues associated with Mast Cell Activation Syndrome. Yasmina has MCAS and has done a ton of self-healing through proper nutrition.
– Links to The Whole 30 book, the nutrition guidelines for EDS by Dr. Collins and other resources mentioned, see above.
– Finding Balance by Drs. Rao & Aggarwal – “Empower Yourself with Tools to Combat Stress and Illness”
Questions, comments, or resources to add? Please email Info@strengthflexibilityhealtheds.com.
***Please note – This post is not intended to be viewed as a directive, a prescription for treatment, a substitute proper medical attention, or to replace seeking the guidance of a certified nutritionist. This post is a compilation of information that I have gathered from reputable sources on nutrition and EDS, as well as nutrition and MCAS. Additionally, this website participates in various affiliate and advertising programs. By clicking on those links, Strength/Flexibility/Health/EDS receives a small advertising commission. All commissions earned are donated directly to EDS Wellness to help support their programs, mission, and initiatives. Please click to read the disclaimer. Copyright and conditions of use can be found here.***
Page last updated: October 25th, 2017.