updated for May 2025
May is Celiac awareness month. It’s also Ehlers-Danlos awareness month. And if you’re really genetically blessed like me, you may be personally aware of the link between the two. If not, indulge me in a quick discussion of the research, because it’s too rarely discussed.
We know that people with EDS, especially hypermobile EDS and hypermobile spectrum disorder are more likely to have GI issues. 90% or more report digestive distress; many people have more than one GI issue. This can have a profound impact on nutrition care.
In terms of Celiac, a 2011 paper indicated that was much more common than expected in people with hypermobile EDS. [1] 19% had positive Celiac serology (bloodwork), and 16% agreed to a biopsy, and those 16% were confirmed to have Celiac disease. Notably, the sample size for this study was small—it was only 31 people—however, 16% is much higher than the expected prevalence of Celiac disease, which is ~1%.
A 2015 paper also indicated a potential link, and 30% of people with Celiac meet the criteria for Joint Hypermobility Syndrome (JHS), which is now known as Hypermobility Spectrum Disorder (HSD). [2]
Most recently, in 2021, a case control report looked at people with all types of EDS, and found that Celiac disease was one of the most common GI conditions associated with EDS. People with EDS who were hospitalized had a 5.47 odds ratio of having Celiac than controls who were hospitalized for other reasons. The study did not break out EDS subtypes, though. [3]
A 2024 pediatric study looked at rates of GI conditions among children and young adults with hEDS and HSD, and found a 4% rate of Celiac disease.[4]
So, while the percentages and the details may still be a question, clearly there is some link between Celiac disease, and EDS/HSD. And since hEDS/HSD affects 2-3% of the population, this should be on every health professional’s radar.
Of course, testing is always essential before dietary changes because a proper diagnosis is critical. Other people may simply respond poorly to the FODMAP content of wheat, so a much larger portion may feel better gluten free, even though they don’t have Celiac.
Footnotes
- Danese C, Castori M, Celletti C, Amato S, Lo Russo C, Grammatico P, Camerota F. 2011. Screening for celiac disease in the joint hypermobility syndrome/Ehlers–Danlos syndrome hypermobility type. Am J Med Genet Part A 155:2314–2316.
- Fikree A, Aktar R, Grahame R, Hakim AJ, Morris JK, Knowles CH, Aziz Q. Functional gastrointestinal disorders are associated with the joint hypermobility syndrome in secondary care: a case-control study. Neurogastroenterol Motil. 2015
- Rachel S Brooks, James Grady, Thomas W Lowder, Svetlana Blitshteyn, Prevalence of gastrointestinal, cardiovascular, autonomic and allergic manifestations in hospitalized patients with Ehlers-Danlos syndrome: a case-control study, Rheumatology, 2021.
- Sood V, Kaul A, El-Chammas KI, et al. High prevalence of gastrointestinal disorders in a large cohort of patients with joint hypermobility. J Pediatr Gastroenterol Nutr. 2024;79(1):42-47. doi:10.1002/jpn3.12245