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Many persons with Ehlers-Danlos Syndrome (EDS) suffer moderate to severe (or even profound) gastrointestinal (GI) problems such
as dysmotility, dysbiosis, and malabsorption, and significant malnutrition typically develops as a result. Additionally, many persons
with EDS experience varying degrees of increased gut wall permeability or gut wall inflammation, and, as a result, many persons with
EDS suffer secondary issues which may be remote to the gut, such as musculoskeletal pain, changes in bone density and mineraliza-
tion, neurological or neuropsychological problems, focal or systemic inflammation, poor wound healing, and immune dysregulation,
including autoimmune issues. The dietary inclusions/exclusions and nutritional supplementation guidelines in this document are gen-
eralized guidelines aimed specifically at supporting nutrition, maintaining normal gut bacterial balance, reducing increased gut perme-
ability, and minimizing any symptoms attributable to gut inflammation or immune dysregulation, including abnormal mast cell activa-
tion.
• Persons who suffer nocturnal hypoglycemia may need to supplement
with glucose tablets or another immediate source of
glucose such as glucose sport gels at night to address paroxysmal awakening with symptoms of hypoglycemia. A healthy,
balanced, low-glycemic index bedtime snack may help to prevent nocturnal hypoglycemia and paroxysmal awakenings.
• Whenever possible, any nutrient clinically suspected to be deficient or specifically demonstrated by testing to be deficient
should be repleted by consistent dietary intake, rather than by resorting to taking a supplement. Some nutrients, such as mag-
nesium and vitamin D, are far too difficult to reliably replete by diet alone and require supplementation in absorbable forms.
• MULITVITAMINS ARE NOT RECOMMENDED. Instead, nutritional support and targeted supplementation is preferred, re-
lying upon food intake for nutrients as much as possible, using supplements only when obtaining adequate food source would
be too difficult.
• The same guidelines for food should be applied to supplements. Supplements should, ideally, be free of added sugars or sugar
substitutes, gluten, preservatives, artificial flavors, or artificial colors, etc.
• Some persons with EDS are particularly affected by gastrointestinal problems which alter fat digestion and ultimately cause
difficulty with absorption of essential fat-soluble vitamins. Addressing apparent deficiencies of fat-soluble vitamins such as
vitamin D or vitamin K may require special consideration by an involved clinician.
• In the event that intake of a healthy diet, in combination with any necessary oral supplementation, does not bring about de-
sired improvements in health as well as normalization of laboratory indicators of nutritional status, parenteral supplementa-
tion (e.g., by IV, by injection, or topically) MUST be considered.
• ALL supplements use MUST be shared (and, ideally, thoughtfully reviewed and discussed) with any involved physician!
When a health care provider reviews prescription and non-prescription (over-the-counter) medications during visits, all sup-
plements, whether they be oral, topical, pill, powder, oil, herb, syrup, etc., should be regarded and discussed as medications.
Side effects and drug-drug or drug-food interactions of all prescription medications should be thoughtfully reviewed and con-
sidered on an individual basis, taking into account whether a person may need specific diet modification such as inclusions,
exclusions, or nutrient supplementation in response to their specific prescription use. Ideally, everyone should carry a clearly
written list of all prescription and non-prescription medications and supplements and their usual dosage, as well as a list of
any allergies to medications, supplements, and foods, and any environmental or seasonal allergies.
RECOMMENDED DOSING FOR SPECIFIC SUPPLEMENTS OFTEN USED BY PERSONS WITH EDS:
• Magnesium as CHELATED MAGNESIUM: 400 to 800mg in the morning as a supplement, with food.
• Vitamin B6 as Vitamin B6 or P5P : 5mg daily through food, OR up to 50mg daily as a supplement.
• Vitamin D3 (cholecalciferol) in a gel or oil form: 5,000iu in the morning as a supplement, with food, during non-summer
months (or year-round, if not getting any significant direct sunlight or if consistently using sunblock). Vitamin D-25,OH level
should be checked every 6-12 months, and dosage should be adjusted accordingly.
• Vitamin C: 3 to 6g (3,000 to 6,000mg) daily through food or as a supplement, with no more than 2,500mg taken in any single
supplement dose.
• Vitamin B12: 100% of USRDA in food or as a supplement.
• Zinc: 100% of USRDA in food or as a supplement.
• Iron: 100% of USRDA in food or as a highly bioavailable supplement, such as ferrous fumarate or ferrous gluconate. Of note,
absorption of iron is aided by co-administration of Vitamin C.
• Quercetin: per bottle instructions. Use plain quercetin ‒
no additional ingredient is needed.
• Curcumin/Piperine: per bottle instructions.
• Glucose tablets: While many foods or fluids can address acute hypoglycemia, the least expensive chewable generic glucose
tablet in the smallest size is fine for use specifically to address acute hypoglycemic episodes and may be most convenient to
have very nearby, to limit the effort expended to raise blood glucose quickly.
• Sodium Chloride: Of note, some persons with EDS who would benefit from increased salt intake are salt averse or simply
find it difficult to get enough salt from their healthy diet. Supplementation with buffered salt tablets (e.g. ThermoTabs) is an
effective and typically well-tolerated means of increasing sodium intake.
Any persons following these guidelines are, of course, encouraged and advised to review them with their involved healthcare provid-
er(s) for further consideration, including whether specific testing such as laboratory measurement of baseline nutritional status, immu-
nologic function, or other indicators of health/disease, followed by surveillance/re-testing is warranted.