EP.360/ Is The Low FODMAP Diet Helpful for Those With Both Endo and POTS or EDS?
Okay so last week I said I had finished with the low FODMAP series, but I changed my mind! I wanted to do one more on the topic, and that’s for my endo peeps who also have postural tachycardia syndrome or dysautonomia, and/or Ehlers Danlos Syndrome.
Let’s first kick off with an explanation of these and why they matter to us endo folk.
Postural tachycardia syndrome is a type of dysautonomia, which means a dysfunction of the autonomic nervous system. The autonomic nervous system governs the essential functions in our body that are automatic, we don’t have to think about them for them to happen, such as breathing, heart rate, blood sugar regulation, digestion and blood pressure. Dysautonomia refers to a spectrum of conditions that affect these functions, one of them being postural tachycardia syndrome, otherwise known as POTS. POTS is a condition where your heart beats faster than normal when you change positions, typically when you go from sitting to standing or from lying down to standing, because there is not enough blood getting to the brain and heart upon standing.
POTS is one of the most debilitating conditions I have witnessed in myself and my clients, and in the worst of these cases, these clients cannot work, they can’t even get up to pour themselves a glass of water or to reach or make food, they may be wheelchair bound and are often bed bound every day or most of their days, and can even experience dangerous symptoms like collapsing and vomiting whilst unconscious in really bad flares. Common symptoms of POTS include dizziness, blurry vision, low blood pressure, weakness, heart palpitations, chest pain, fatigue, brain fog, rapid breathing and heart rate, nausea, gut symptoms and low appetite, poor temperature regulation, and tremors to name a few. The severity of dysautonomia and POTS can vary, with some people being able to function but still struggling with symptoms that affect their quality of life, and others as you’ve just head, being completely debilitated by the condition(s).
Ehlers Danlos Syndrome is a condition belonging to a group of conditions called Hypermobility Spectrum Disorders, with hypermobile-EDS and EDS being at the most severe end of these disorders. EDS is a group of connective tissue disorders, there are several types, but the most common is hypermobile-EDS, and whilst the main symptoms include joint pain, loose joints and body pain, they also occur with gut symptoms, migraines, histamine issues, chronic fatigue, dysautonomia, pelvic related issues such as bladder pain and a many more. Unfortunately, hEDS tends to get worse with time, especially in undiagnosed cases, which is common, and histamine issues actually worsen the condition, due to their effects on blood vessels (I’ll be doing more on this in the future).
So, why do these conditions matter to endometriosis?
Because we are seeing a huge cross over between these conditions, and the research here is evolving.
There isn’t as of yet a definitive link between POTS and endometriosis, but there is a link between EDS and endometriosis, and POTS is a co-condition of EDS, so it’s reasonable to assume that some of the endo patients who have EDS, will also have POTS. In fact, it is extremely common for the trifecta of POTS, EDS and Mast Cell Activation Syndrome to all occur together and as I’ve shared multiple times on the show, I see all three of these conditions in the majority of my clients.
Now here’s some more interesting links. There’s been an increase in POTS diagnoses since COVID, and it appears that COVID or long covid, is triggering POTS. And both long COVID and POTS are affecting young women more, especially those with autoimmune conditions or immune related conditions like endometriosis.
I personally saw a HUGE increase of clients coming to me who had been exposed to covid, and following that, developed debilitating symptoms that eventually resulted in a POTS, EDS and MCAS diagnosis.
In terms of EDS, previous research estimated 6-23% of patients with EDS also had endometriosis and I reported on this back in episode 164. However, a recent study just published, looking at over 43,000 endometriosis patients, found that those with endometriosis had a 7x higher odds of having EDS.
Now it’s also worth mentioning here that we’re seeing a link between endometriosis and histamine issues or MCAS issues, and also mast cell activation in long covid cases, which as I said earlier, affects women more, especially those with other immune related conditions. And again, as I just said, mast cell activation can worse EDS symptoms due to the effects that histamine has on connective tissue, so this is another reason why in recent years, more endo peeps are getting diagnosed with EDS or having worsening symptoms.
So, this now brings me to the low FODMAP diet.
For those who aren’t familiar, let’s do a basic overview of the low FOMDAP diet. The low FODMAP diet is a therapeutic diet prescribed to those with IBS and/or SIBO, which reduces for a period of 2-6 weeks, foods high in fermentable carbohydrates. Fermentable carbohydrates, like inulin, which is found in garlic and onions, help feed our good gut microbiome, which is known as the process of fermentation. This process creates gas, and this triggers in some sensitive individuals, IBS-symptoms or SIBO flares. Once the restriction phase is over, each FODMAP group (as there are different types) are reintroduced to test tolerance, and from there, people are able to create a personalised nutrition plan that is unique to their individual FODMAP tolerances.
Many of my clients with EDS or POTS, or both, have a lot of IBS symptoms and struggle to eat. This is very common. Because POTS and dysautonomia affect the autonomic nervous system, this also includes the functioning of digestion, and EDS can cause a range of issues with the gut, including gastroparesis and delayed gastric emptying due to dysmotility.
In fact, IBS is extremely common in POTS and EDS patients. Whilst the estimates vary from study to study, all report the prevalence to be high. A 2024 study found that in those with POTS, 79% experience nausea, and bloating was reported as being one of the most severe gut symptoms. One study found that IBS and other GI conditions affect 75% of those with EDS. There is so much research out there showing the significant association between IBS and POTS/EDS, so definitely go ahead and do some of your own research if this is of interest to you, and I’ve put some further reading in the show notes.
Additionally, we also know that SIBO occurs in these demographics too, because of the way that POTS and EDS affect the digestive function.
So, how can the low FODMAP diet help? The low FODMAP diet is actually recommended as an option for those with POTS or EDS who also struggle with GI symptoms.
With both of these conditions, smaller more frequent meals are often recommended as it puts less pressure on digestion, which is struggling, and can help with the issues of nausea and lack of appetite due to dysmotility. As we’ve explored before, the low FODMAP diet reduces serving sizes of certain foods, so as a result, this can help with the recommendation of eating smaller meals and servings. Additionally, we know that in those with IBS, FODMAPS can cause symptoms like gas and bloating, often two of the most reported symptoms with POTS and EDS.
Whilst the FODMAPS will not be the key culprit behind these patients’ IBS, they could be worsening issues and triggering symptoms, and so identifying which foods are better tolerated and worst tolerated, could be really helpful in getting patients to eat more and to tolerate the food they’re eating. This is so important as don’t forget, a lot of these patients have reduced appetite and as a result cannot tolerate eating, so can and often do, suffer with deficiencies.
We also know that histamine can worsen both POTS and EDS symptoms, so again, reducing histamine load with the low FODMAP diet can also help.
There’s also a lot of food fear with POTS and EDS, due to issues like vomiting after eating, so whilst the low FODMAP diet is yes - restrictive at first, it can help someone to strategically learn which foods are safe for them, and can help them to build a list of foods they trust and feel comfortable eating.
Now, as I’ve said earlier in this series, this diet is a short term, therapeutic diet that should be prescribed and overseen by a doctor and/or a dietician, so if you’re interested in trying it, please consult your doctor first.
Finally, I also wanted to remind you the low FODMAP diet doesn’t work perfectly for everyone, and it won’t resolve all your GI symptoms because there will be multiple root causes, not just FODMAPS, but it may help, so if you feel like it’s something you could do without it being too triggering for you emotionally, it’s worth exploring.
Show notes
Low FODMAP diet info
https://www.monashfodmap.com/about-fodmap-and-ibs/
https://pmc.ncbi.nlm.nih.gov/articles/PMC4918736/
EDS definition
https://www.ehlers-danlos.com/what-is-eds/
POTS definition
https://www.standinguptopots.org/POTSsubtypes
Long covid
https://nurosym.org/blogs/in-conversation-with/dr-david-strain
https://news.utoledo.edu/index.php/03_24_2025/covid-19-brought-about-a-large-rise-in-pots-cases#:~:text=The UToledo study, however, points,COVID may actually have POTS.
https://pmc.ncbi.nlm.nih.gov/articles/PMC10166245/
https://pmc.ncbi.nlm.nih.gov/articles/PMC12079877/#:~:text=The pooled prevalence of long,the forest plot in Fig.
EDS and endometriosis
https://pubmed.ncbi.nlm.nih.gov/9420859/
https://www.eds.clinic/articles/endometriosis-ehlers-danlos-syndrome
https://www.theendobellycoach.com/podcast/endometriosis-and-ehlers-danlos-syndrome?rq=Ehlers
IBS and POTS
https://www.frontiersin.org/journals/physiology/articles/10.3389/fphys.2024.1342351/full3
https://www.researchgate.net/publication/284068911_Gastrointestinal_Dysfunction_in_Postural_Tachycardia_Syndrome#:~:text=of these patients.-,...,[37]. …
https://www.researchgate.net/publication/345601295_Postural_Tachycardia_Syndrome_and_the_Gut
Low FODMAP diet and POTS
https://www.potsuk.org/managingpots/diet-and-fluids-2/
https://sci-hub.se/10.1016/j.autneu.2018.09.003
https://med.virginia.edu/ginutrition/wp-content/uploads/sites/199/2019/06/POTS-June-2019.pdf
Low FODMAP and EDS
https://practicalgastro.com/2024/06/17/nutritional-considerations-for-hypermobile-ehlers-danlos-syndrome/#:~:text=If symptoms do not improve,compared to IBS-C controls.
IBS and EDS
https://www.eds.clinic/articles/gastrointestinal-issues-ehlers-danlos-syndrome-guide
https://pmc.ncbi.nlm.nih.gov/articles/PMC7255528/
https://pubmed.ncbi.nlm.nih.gov/29687534/
SIBO and EDS
https://pubmed.ncbi.nlm.nih.gov/37858959/
SIBO and POTS
https://pubmed.ncbi.nlm.nih.gov/29326369/
https://sci-hub.se/10.1016/j.autneu.2018.09.003
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