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As a follow up to our latest article on supplements, we will take some time to dig into the current knowledge on supplement use. Research to date on nutritional supplementation for EDS/HSD has been mostly hypothetical in nature so far. Further understanding the type of collagen that is impacted by a genetic variant or subtype of EDS is needed to know exactly how that affects nutrition function. Oral supplementation of collagen for examply only covers about 3 different types of collagen, making it unknown if it will benefit the type of collagen affected by your particular EDS subtype. In addition, research involving a particular collagen product or collagen supplement in a specific subtype of EDS/HSD is needed to determine if taking additional collagen truly proves to be a benefit.
When living with a chronic condition – especially when facing a variety of symptoms – one may want to inquire on their own or be influenced by social media on specific diet or supplement protocols that promise an improvement in quality of life. Before trialing such regimens, there are some questions you may want to ask yourself. These include:
- Does this reference speak specifically to research on EDS or HSD patients?
- Does this reference address my particular subtype of EDS or HSD?
- Was the particular product recommended researched for my particular subtype of EDS or HSD or co-occurring condition?
Each individual living with EDS and HSD is unique in their experience and it could significantly differ from the person next to them. What works for one person may not work for the next. Therefore, hesitancy should be made around following advice with language that offers blanket protocols for all people with EDS or HSD. If you are struggling to manage the symptoms you are experiencing with EDS, HSD or a co-occurring condition, consider reaching out to your multidisciplinary team with a potential referral to a dietitian knowledgeable in EDS, if not already part of your care team.
Have you tried supplements that helped? Any that didn’t? Please share in the comments below!
Author: Lisa Mejia RD/N, LD/N, CDCES, IFNCP
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I found methylated folate, methylcobalamin (B12), B6, choline and betaine to be helpful. Particularly folate and choline due to my genetic variants on the MTHFR, PEMT, CHDH and ChAT genes. I ran my Methylation Cycle report on SelfDecode and found single and double variants on most of the significant genes affecting the Methylation Cycle. Tulane University is doing some great work on this!
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2 ReactionsI have found Ligaplex II to be incredibly helpful for exercise recovery, pain and stiffness.
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1 ReactionWe all need to help each other as it is impossible to find a doctor who knows anything about this disease besides recognizing the name
Am other the waiting list for Tullane but was told to expect 2-3 years wait.
This speaks loudly regarding how many people are affected.
Wonder if it is being studied and researched in Europe ?
pretzelgirl
Here's an update on my journey towards better health that might be helpful for others...
To help identify the areas that needed nutritional support, I ran a Genova Diagnostics NutrEval test.
This test helped me determine what I needed to focus on, and also what might be due to malabsorption (GI inflammation/bacterial or yeast imbalance as evidenced by the specific Malabsorption/Dysbiosis Markers) vs malnutrition (dietary shortfall).
For example, despite a genetics report that indicated I should have typical levels of Fatty Acids, and a diet high in Fatty Acids, my ALA (an essential element that comes only from diet) was too low to evaluate. I had previously been supplementing with EPA/DHA since those levels had been routinely tested and supplemented accordingly, so those were normal. But due the shortfall in the cofactors needed to convert EPA, my DPA was mildly low as well. So I am now supporting my ALA levels, plus monitoring the required cofactors, as well as my EPA/DHA levels as my ALA levels improve.
In the meantime, I'm reducing the use of NSAIDs and using an Elemental Diet short term and anti-bacterial/yeast diet and probiotics in the longer term to rest and heal my GI tract.
https://pmc.ncbi.nlm.nih.gov/articles/PMC3890944/
https://drruscio.com/gut-health/
Interestingly, my very low levels of ALA could be the cause for a number of my symptoms.
https://selfhacked.com/blog/alpha-linolenic-acid/
Here's some additional links:
https://www.gdx.net/products/nutreval
Various providers offer the NutrEval test online, but I will be consulting with my Holistic MD on my results...without that the amount of information included in this test could be overwhelming.
I believe, based on my experience that a Holistic or Functional MD would be the most helpful in sorting through the nutritional and GI issues that seem to go hand in hand with EDS/hEDS.
https://www.mayoclinic.org/departments-centers/integrative-medicine-health/sections/overview/ovc-20464567
https://my.clevelandclinic.org/departments/functional-medicine/about
https://my.clevelandclinic.org/-/scassets/files/org/functional-medicine/lab-kits/5-nutreval-test-kit.ashx?la=en
Wishing you all good health!
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