Food & Fluids Sensitivities: Our hEDS/HSD Experience
For years, my wife struggled with severe symptoms associated with eating and drinking, including gut pain, dehydration, and malnutrition. Despite extensive testing and consultations with doctors and specialists, we struggled to obtain a clear explanation or an effective treatment plan.
As her health deteriorated, we searched widely for information and possible answers. Through research and changes to her food and fluid intake, we eventually found an approach that helped her. We created this website to share what we learned, in the hope of helping others facing similar difficulties feel less alone and better prepared to seek support.
- Our personal experience of managing symptoms associated with foods and drinks.
- Practical accounts of the foods, ingredients, and products we used to support nutrition and hydration.
- What helped make eating and drinking more manageable for my wife.
- Information relevant to people with hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorders (HSD).
Understanding the symptoms
Food allergy, food intolerance, and other symptoms triggered by eating or drinking can overlap, but they have different causes and may require different treatment. We use “sensitivity” as a general description of symptoms, rather than as a confirmed diagnosis.
Digestive problems occur frequently in people with hEDS and HSD. However, having either condition does not establish that symptoms after eating or drinking are caused by an allergy. Persistent or severe symptoms need individual assessment.
For background information, see The Ehlers-Danlos Society’s overview of gastrointestinal involvement in EDS.
Using this website
This website shares personal experience and general information. What helped my wife may not be suitable for someone else, and the information here cannot replace individual medical advice.
Discuss substantial dietary restrictions with a clinician or registered dietitian, particularly if you are losing weight or struggling to obtain enough nutrition or fluids. Do not test or reintroduce a food suspected of causing an allergic reaction without medical guidance.
This website does not provide specific guidance on peanut allergy. Serious allergic reactions can also occur with other foods. If a reaction causes difficulty breathing, throat swelling, or collapse, use prescribed emergency epinephrine (adrenaline) immediately and call your local emergency number.