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Guest Post by Stephanie Kelly, Vital Food Therapeutics Nutrition Intern

What is Ehlers-Danlos Syndrome (EDS)?

EDS is a range of roughly 6 types of possible genetic disorders that affect the connective tissues, specifically collagen synthesis, characterized by skin hyper-extensibility, joint hypermobility, and tissue fragility.1 There is no current cure for EDS, but education around the syndrome can prevent further injury and the progression of symptoms, leading individuals to live a healthy long life. Hypermobility-type EDS (type III) is the most common, followed by Classical-type EDS (types I and II).2 One of the overarching problems with EDS is the rate at which it goes undiagnosed. Due to the variety of seemingly unconnected symptoms, the disease is normally misdiagnosed and not as rare as initially thought.3

What are some signs of having EDS?

The three most prevalent signs are overly flexible joints, fragile skin, and stretchy skin.4 Overly flexible joints are a common symptom of EDS, due to decreased connective tissue holding the joints together, allowing for an increased risk in dislocations, along with overall joint pain.4 Collagen is needed in both the skin and joints in order to properly protect these areas from damage, and repair them upon injury.

What does this have to do with the GI tract?

Since collagen is the most abundant protein in the body, all tissues from ligaments, blood vessels, eyes, muscles and large organs are affected. Each of these tissues can experience systemic weakness and instability, allowing increased flexibility. Due to altered collagen synthesis, the GI tract can experience structural abnormalities, resulting in a variety of symptoms that look like Irritable Bowel Syndrome (IBS)—gas, bloating, cramping, fatigue, abdominal migraines3—along with acid reflux and other gut symptoms.5 Individuals that have EDS can also suffer from increased allergies and sensitivities over time. Due to the variety of gut symptoms, along with seemingly unconnected symptoms of muscle and bone pain, having EDS can be difficult to pin point in comparison to IBS, SIBO, and other gut disorders. It is important to note that since the GI tract is primarily made up of connective tissue, i.e. collagen, this can lead to SIBO secondary to altered gut motility.3

How can dietary changes help control EDS symptoms?

There are currently no medications that can target the connective tissues specifically, but altering one’s diet may help manage overall symptoms.5 Consuming a diet high in refined carbohydrates, sugars, and fried foods can all decrease natural collagen over time, further affecting collagen production thereafter.6 There are foods high in collagen, or collagen supporting nutrients, that can be consumed in order to maintain collagen and help repair and rebuild already existing collagen.Kettle & Fire produced a great list of foods high in collagen and other necessary micronutrients required for collagen synthesis:6

Foods containing bioavailable collagen. Bioavailable collagen can be utilized by the body in its current state to help rebuild damaged areas.

  • Bone Broth
  • Eggs

Foods containing zinc/sulfur. Zinc and sulfur both help in the activation of proteins needed for collagen synthesis.

  • Cashews (high FODMAP)
  • Chickpeas
  • Eggs
  • Garlic (high FODMAP)
  • Pumpkin Seeds
  • Spinach
  • Wild Salmon

Foods containing vitamins C, A, E and chlorophyll. Chlorophyll helps increase procollagen in order to synthesize collagen. Antioxidants help connect the amino acids to form collagen.

  • Avocados
  • Avocado Oil
  • Berries
  • Broccoli
  • Chlorella
  • Citrus
  • Green algae
  • Leafy Greens (kale, arugula, lettuce)
  • Tomatoes

Most people that experience IBS like symptoms secondary to EDS have found relief following some form of an IBS Diet. The consumption of non-inflammatory foods can aid in the recovery of the gut. This is important since decreased gut integrity, secondary to decreased collagen synthesis, is a hallmark of EDS.

General IBS Diet Outline7

  • Foods that are healthy to consume:
    • Homemade bone broth
    • Organic lean protein to combat possible protein deficiencies (fat malabsorption is common in IBS, thus limiting some protein sources to lean sources can help aid in better protein digestion and absorption)
    • Fresh vegetable juice
    • Steamed non-starchy vegetables
    • Healthy fats
    • Fruit in moderation early in the day to decrease possible irritation of the gut lining during the healing process
    • Water—in order to keep the GI system healthy and functioning
  • Foods that should be avoided:
    1. Conventional dairy
    2. Gluten
    3. Sugar and refined flour
    4. Caffeine—can stimulate the GI tract and increase inflammation
    5. Potential allergens or sensitivities
    6. Spicy foods
    7. Grains—phytic acid and starch can irritate the intestinal lining

Individuals with EDS may also present with CoQ10, vitamin C, vitamin K, and glucosamine deficiencies, where adequate intake through diet or supplementation could help alleviate symptoms.8 Calcium and vitamin D are also important nutrients for individuals with both IBS and EDS to help manage symptoms and prevent future health conditions.9

Closing thoughts:

A restrictive diet, such as a low FODMAP diet, can be difficult to manage and challenging at times. It is important to remember that restrictive diets should be short term, that most people do not react to every FODMAP, and that most foods can be reintroduced over time with improved gut health. Some food sensitivities or intolerances may last longer, or be lifelong, like gluten. Tracking symptoms and foods may be beneficial in order to see which foods are triggering the gut and causing symptoms. Eliminating major irritants will decrease overall inflammation and reset the immune system in order to support the repair process of the gut and other affected tissues. It can feel daunting to confront EDS, SIBO, and IBS symptoms, but by addressing the issues and utilizing qualified health practitioners, it’s very possible to begin to heal the gut and manage EDS.

Citations:

  1. Overview of the management of Ehlers-Danlos syndromes – UpToDate. https://www.uptodate.com/contents/overview-of-the-management-of-ehlers-danlos-syndromes?search=Ehlers-Danlos%20and%20SIBO&source=search_result&selectedTitle=5~150&usage_type=default&display_rank=5. Accessed February 19, 2018.
  2. Genetics of Ehlers-Danlos Syndrome: Background, Pathophysiology, Epidemiology. November 2017. https://emedicine.medscape.com/article/943567-overview. Accessed February 19, 2018.
  3. Burns D. Another Piece of the Puzzle: An ME/CFS/FM Patient Gets an Ehlers Danlos Syndrome Diagnosis. Health Rising. https://www.healthrising.org/blog/2016/07/01/chronic-fatigue-fibromyalgia-ehlers-danlos-syndrome-diagnosis/. Published July 1, 2016. Accessed February 19, 2018.
  4. Ehlers-Danlos syndrome – Symptoms and causes. Mayo Clinic. http://www.mayoclinic.org/diseases-conditions/ehlers-danlos-syndrome/symptoms-causes/syc-20362125. Accessed February 19, 2018.
  5. Diet and EDS research fund – The Ehlers-Danlos Support UK. https://www.ehlers-danlos.org/studies/diet-and-eds-research-fund/. Accessed February 22, 2018.
  6. Eat These 12 Foods to Get More Collagen in Your Diet. Kettle Fire Blog. March 2017. https://blog.kettleandfire.com/foods-with-collagen/. Accessed February 22, 2018.
  7. The IBS Diet and Food Cures – DrAxe.com. Dr. Axe. https://draxe.com/ibs-diet-food-cures/. Accessed February 22, 2018.
  8. Mantle D, Wilkins RM, Preedy V. A novel therapeutic strategy for Ehlers–Danlos syndrome based on nutritional supplements. Med Hypotheses. 2005;64(2):279-283. doi:10.1016/j.mehy.2004.07.023
  9. Levy HP. Ehlers-Danlos Syndrome, Hypermobility Type. In: Adam MP, Ardinger HH, Pagon RA, et al., eds. GeneReviews®. Baltimore (MD): Johns Hopkins University School of Medicine; 2016. http://www.ncbi.nlm.nih.gov/books/NBK1279/. Accessed February 22, 2018.