Role of nutrition in EDS & HSD – PART 1

Straight up I want to say – there is no magic diet OR single nutrient OR supplement (inc protocol) alone that can ‘fix’ a connective tissue condition, such as Ehlers-Danlos Syndrome (EDS) or Hypermobility Spectrum Disorders (HSD). Why is this?

For starters, we are all individuals, therefore each person has different need to the next person.

Whilst at times, our needs may be similar, there are many factors that make up you, including:

  • Your journey through life to where you are today.
  • Your current health status & symptoms.
  • Your existing medical diagnoses.
  • Your current (& for some historical) nutrition intake.
  • Your current (& for some historical) lifestyle this can include; activity, specific exercise, sleep (quantity & quality), your stress (all types), your support network, your environment.
  • Your genetics that may impact your health including aspects of nutritional status (we’ll get into that later).
  • Your preferences…for food amongst many other things!

If you can find another person who has the EXACT same set of answers / journey / experience to date, then I’ll stop right now.

 

Secondly, the body is complex. Biochemical pathways don’t rely on a single nutrient or hormone to work…. want to see what I mean? Take a look at The Roche Pathways below. We have huge printed versions of these in the display in the clinic;

  • Part 1 looks like the most complicated railway system ever and shows all metabolic pathways in the body.
  • Part 2 looks at all the cellular and molecular processes

The images below are too small to show the detail, so follow the links to interactive versions and you will see what we mean – if you’re ever on a video call with Helen she currently has Part 1 up behind her.

Part 1: Metabolic Pathways

Part 2: Cellular & Molecular Processes

Can nutrition help with EDS / HSD?

Yes. We can use our nutrition i.e. intake of energy, nutrients & information to help our bodies work the best they can, and that includes in EDS/HSD. We must also consider your starting point, your access to and your relationship with food, alongside all medical considerations. Nutrition is increasingly being included in considerations for multi disciplinary care for hEDS/ HSD, although access for many remains a challenge. Whether that is access to do geographical location, access to qualified, knowledgeable, EDS aware & experienced clinicians. One advantage for nutrition over some disciplines is often consultations can take place remotely, via video / telephone call or as it is referred to ‘telehealth’.

At Spriggs Nutrition we focuses on supporting hypermobile EDS and Hypermobility Spectrum Disorders – less so the genetically defined types of EDS. We offer both in person and remote consultations.

 

What does nutrition support mean in practice?

When we are supporting someone nutritionally who has hEDS or HSD, we are usually looking at supporting the associated symptoms or conditions, which may include:

  • Gastrointestinal concerns
  • Nutrient absorption
  • Food reactions
  • Low energy
  • Severe fatigue
  • Blood glucose regulation
  • Altered quality or quantity of sleep
  • Bone health
  • Helping to understand headaches or migraines
  • And any combination of the above – and other factors.

Firstly, a detailed consultation to understand and assess your unique situation, through case history, medication and supplement review, discussion around current food habits. Support strategies then may include; adaptations to existing dietary habits, assessing and altering nutrient intake where appropriate, supporting digestive function through lifestyle/habit changes, or at times addition / amending certain dietary intake or supplementation. All recommendations are tailored to suit your needs.

 

You mentioned genetics earlier – why is that relevant to nutrition?

The correct term fur us to use here is nutrigenomics, meaning; “the scientific study of the interaction of nutrition and genes, especially with regard to the prevention or treatment of disease.”

Nutrigenomics becomes a consideration for some, when thinking about how well your body is programmed to convert certain nutrients into a version your body can use, or the efficacy certain nutrient receptors can receive messages. There is a lot we don’t know about genetics and nutrigenomics so we must be careful not to overly rely on this type information without also thinking about your individual case, family medical history, your symptoms (if present), other test results and wider health status.

 

There are some hypothesis papers that have hit the headlines in recent times. For example to Tulane paper(1) talking about folate (Vitamin B9) and the Methylenetetrahydrofolate reductase aka MTHFR gene as a mechanism for hypermobility. In that by having an MTHFR variant potentially reduces, more accurately it alters, your ability to convert folate into methyl-folate, the active version of the vitamin. Many in the EDS community got very excited about this, and of course increased research is a good thing. BUT…please remember:

  • This is a hypothesis (aka a theory) paper.
  • The paper is considered preliminary findings.
  • There was no clinical trial to test the theory.
  • The theory is talking about a variant of the MTHFR gene being a factor in the hypermobile population.
  • Hypermobility alone is not a pathology.
  • We do not know the prevalence of an MTHFR variant in the EDS / HSD population.
  • The estimated prevalence of an MTHFR variant in the general population is 40-60%.

The authors of the paper used data from a clinic that specialises in seeing EDS patients, and when reviewing blood chemistry saw a higher than typical number of patients will elevated blood folate levels. However, more data, analysis and research is needed before any conclusions are drawn. Research rarely gives us answers, usually just more questions.

The Tulane article states: “Those with this genetic variant can’t metabolize folate, which causes unmetabolized folate to accumulate in the bloodstream”

However… a more accurate way to describe the impact of a variant on the MTHFR gene might be, it may reduce your capacity or efficacy to convert folate into methyl folate. I can get very geeky here but I don’t want to send you to sleep, so just to boggle your eyes, below is a diagram of the Methylation cycle, happening in your body right now. The MTHFR enzyme is highlighted with the red arrow which as you can see if one part of one smaller cycle in the whole process. Of course, if we have a genetic variant here, it can impact onward steps BUT it also helps to understand what how you are programmed before and after this step, as in some situations, you are programmed to ‘compensate’ for genetic variants.

Methylation cycle with MTHFR highlighted – Image via Lifecode Gx – Methylation report 

 

I think that’s enough for the time being, but stay tuned for the next part in this series on “What role can nutrition have in EDS & HSD?” During this series we’ll discuss a mix of aspects of nutrition in the context of hEDS/HSD, co-occurring conditions, nutrition perspectives, testing and supplements!

References:

  1. Jacques Courseault, Catherine Kingry, Vivianne Morrison, Christiania Edstrom, Kelli Morrell, Lisa Jaubert, Victoria Elia, Gregory Bix, Folate-dependent hypermobility syndrome: A proposed mechanism and diagnosis, Heliyon, Volume 9, Issue 4, 2023, e15387, ISSN 2405-8440, https://doi.org/10.1016/j.heliyon.2023.e15387. (https://www.sciencedirect.com/science/article/pii/S240584402302594X)
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