Diane’s story
In her late 40s, my wife, Diane, began experiencing increasingly severe and painful digestive problems, along with weight loss. She had previously been diagnosed with Ehlers-Danlos syndrome (EDS).
Diane had experienced digestive symptoms since childhood. Some were mild, while others were difficult to manage, but she had grown accustomed to them and assumed that many other people experienced similar problems. Looking back, we recognize how much she had learned to live with.
As her symptoms worsened, we consulted specialists, including some who had encountered similar cases. Despite these consultations, we were left without a clear explanation for her digestive problems or an effective treatment plan. During this period, she experienced anemia, dehydration, and malnutrition, as well as loss of weight, muscle mass, and bone density.
One Friday, she had a particularly painful and debilitating episode at work. By the time she arrived home, she appeared severely dehydrated, felt nauseated, and could not eat. Frightened by her condition and worried about possible organ failure, we went to the emergency department seeking assessment and intravenous fluids.
That Friday became a turning point.
Finding a way forward
Our immediate priority was to help Diane stay hydrated and nourished. While continuing to follow up with specialists, I searched for information and contacted anyone who might be able to help.
We began to suspect that particular foods and drinks were contributing to her symptoms. That weekend, we discussed what I had found and developed a plan to change her food and fluid intake. Within days, her condition became more stable, and she was able to return to work.
This improvement was encouraging, but it did not tell us exactly why those changes helped or establish whether individual reactions were allergic or had another cause. Over time, we continued making adjustments, observing what Diane could tolerate, and seeking medical advice. Since then, we have done relatively well in maintaining and improving her health, although managing her symptoms remains an ongoing process.
Why we created this website
This website shares our experience since that turning point: the foods and drinks we tried, the products we used, the approaches that helped Diane, and the difficulties we encountered.
We give particular attention to people living with hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorders (HSD). These are related diagnoses that can involve digestive problems, but HSD is not simply a new name for EDS. Each person’s symptoms and nutritional needs require individual assessment.
Our focus is practical: making eating and drinking more manageable while supporting hydration and nutrition. Many of the products we describe are available in ordinary stores. Their availability, however, does not mean they are suitable for everyone.
We are sharing what helped Diane, rather than offering a treatment plan that has been tested in other people. We cannot promise that the same changes will produce the same results for someone else.
We are not doctors and have not worked in the medical field. We continue to consult doctors and specialists, and encourage readers to do the same. A registered dietitian can also help assess nutritional adequacy, especially when only a limited range of foods is tolerated.
If sharing our experience helps even one person seek support sooner or feel less alone, this work will have been worthwhile.
Our independence
We receive no payments, discounts, or other benefits for mentioning the brands, products, or apps on this website. Our comments are based on our personal experience.
When to seek medical help
Persistent digestive symptoms, unintended weight loss, or difficulty obtaining enough food or fluids deserve prompt medical assessment. Do not assume they are simply part of EDS, HSD, or a food sensitivity.
Seek urgent medical advice if you cannot keep fluids down, are urinating much less than usual, or have persistent dizziness on standing. Confusion, difficulty waking, or signs of collapse require emergency help. Treatment depends on the cause and severity; intravenous fluids are not a substitute for nutritional care. NHS: dehydration
Diane also experienced a frightening reaction after receiving a steroid medication: her throat swelled, and she could not breathe. Emergency responders arrived within minutes and treated her. This experience reinforced the importance of having suspected medication allergies assessed and clearly documented.
If you are prescribed emergency epinephrine (adrenaline), keep it accessible and follow your allergy action plan. For suspected anaphylaxis—such as sudden throat swelling, breathing difficulty, or collapse—use it immediately and call your local emergency number. Do not wait to see whether symptoms improve. NHS: anaphylaxis
