Ehlers-Danlos syndromes (EDS) are a group of 13 inherited connective tissue disorders. Subtypes have their own symptoms, but all EDS stem from abnormal structures of connective tissues and collagen.
Common symptoms include:
EDS are syndromes present at birth. People don’t develop EDS later in life as one can with celiac disease. If symptoms haven’t appeared by early adulthood, it’s unlikely a person has EDS.
People with celiac disease often report joint-related symptoms. A study found that those with celiac disease have a 49% increased risk of EDS than those without celiac disease. The opposite is true, too: people with EDS are more likely to have celiac disease than those without EDS.
Diagnosing Ehlers-Danlos syndromes mainly consists of identifying symptoms associated with EDS along with genetic testing, which can help identify a subtype. Given that EDS are genetic syndromes, a family history of the condition is usually present and is taken into consideration. Skin biopsies may be used in the diagnostic process.
This is a rare disease, so if you’re concerned that you may have EDS it would be best to speak with a specialist who is familiar with EDS rather than only your general practitioner or family physician.
Treatment options include drugs for pain, physical therapy for joint issues, and use of braces to keep joints in place. For those with subtypes characterized by fragile or thin blood vessels, some doctors may recommend blood pressure medication to reduce stress on blood vessels. In severe cases, surgery may be required to repair joints injured by repeated dislocations.
Lifestyle changes may be recommended to avoid injury, such as avoiding contact sports and weightlifting, using super-dense body pillows to support the body during sleep, and wearing extra-supportive shoes.
There is no cure for Ehlers-Danlos syndromes.
If you have been diagnosed with celiac disease and EDS, it is also important to remain on a strict gluten-free diet.