EP.189/ Endo Belly and IBS Awareness Series: The Key Causes of SIBO Relapses in Endo Patients
It’s IBS Awareness Month and because IBS is so common within the endo community, I’m going to continue with this theme of IBS and endo belly, which I’ve been focusing on over the past few weeks.
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Now, one of the key causes behind IBS is SIBO. In fact, current research estimates that the majority of IBS cases are really SIBO cases, and as you’ve probably heard about 100 times by now, research estimates that up to 80% of endo patients may have SIBO. This is based on a small amount of research and so that number may change in the future, but I would say that this number is accurate, at least based on the clients I see.
Before you start thinking about SIBO testing and treatment, I first want to say that I don’t always think jumping straight into SIBO treatment is wise.
SIBO tends to be tricky to treat and a long process, so I require my clients to be in a reasonably stable place with their endo and mental resilience before we begin SIBO treatment. Now of course, treating SIBO also helps with the endo symptoms, so in some cases, we do start with the SIBO first, but as much as I can, I like to get endo to a place where it’s not ruling my client’s lives and they’re not feeling ill on a daily basis. So, just keep that in mind.
Now, if you know you have SIBO or you suspect you do, it’s important to understand what your journey may look like and the truth is, whether you have endo or not, two thirds of people who clear their SIBO, will relapse. Which means they will fall into the ‘chronic’ category. This doesn’t mean they can’t live well or clear the SIBO again. What it means is that there’s a root cause that’s hidden and maybe trickier to treat, which is causing that person to relapse. After this relapse, they may be able to find the root cause, treat it and then treat the SIBO again, and move into the not-chronic category and never develop SIBO again. For others, their root cause may be less treatable, they may never be able to fully heal the root cause, but they may be able to dramatically improve it. This could then give them longer time frames between relapses of SIBO, or mean that they have less SIBO, and could generally overall improve their quality of life with SIBO. And on that note, if you have chronic SIBO, that doesn’t mean you’ll always have SIBO all the time, the time between relapses tends to be two months to one year. If that time frame is less, you’re known as a rapid relapser, which is what I am (yay for me) – and that means there’s a pretty big root cause to be addressed, which I’ll get to later. But whether you relapse straight away or in two years, you can live well with SIBO. You can manage symptoms, live a full life, and improve digestion and nutrient absorption. I mean look at Dr. Allison Siebecker. She is a chronic case, and she lives a full and healthy life, and eats a pretty normal diet too! It’s about understanding your condition and knowing your personal tools for management.
But today, I want to talk about some of the main reasons why people with endometriosis may relapse with their SIBO, so that if it happens to you, you know what to do – or so you can prepare ahead of time and get these issues checked out.
Number one is pretty obvious and that’s adhesions from surgery or from endo itself. Structural issues are one of the two most common causes of SIBO. There are two direct causes of SIBO; so, a structural problem or a functional issue with the migrating motor complex, and there are many risk factors like diseases or problems that then lead to these direct causes. So, it’s not that these diseases or risk factors cause the SIBO, but they cause a problem which leads to the SIBO – and with endometriosis or surgery for endo, this can lead to alterations in the structure of the intestine, because adhesions can distort them.
These adhesions can cause kinks, loops, pockets of intestines that bacteria get trapped in and obstructions, which all lead to the same result: bacteria get stuck in the small intestine. Now remember, SIBO stands for small intestine bacterial overgrowth. A condition where bacteria accumulate in the small intestine, when they should be living in the large intestine, and this community of bacteria create gases that cause IBS symptoms like bloating and damage the small intestine, resulting in malabsorption of nutrients and full body problems like chronic inflammation.
Given that 50-100% of people who have abdominal surgery will get adhesions, it’s quite likely that most of you listening will have them. Now, that doesn’t mean that they’re distorting your intestines, but it’s worth checking because when they are, you could get this bacterial build up that I’m talking about.
When I work with SIBO clients, I try to do this earlier on. Normally, you might actually just wait and see whether you relapse before you spend money on investigating the root cause, unless it’s an obvious one. At least, this is what Dr. Siebecker advises and that works well for her, and she’s one of the leading experts. You also have the prevention of relapse phase, which is 3-six months, post-treatment and that itself addresses some of the root causes and is really an essential step to the overall SIBO protocol, otherwise you pretty much are guaranteed to relapse without it. But, for us endo peeps, because we’re so prone to adhesions, I just assume from the get-go that this may be a problem, and we get these assessed early on, either during treatment or during the prevention of relapse.
People who have body work in the prevention of relapse phase, like abdominal massage, tend to recover better and have a prolonged remission time, so I always advise this as standard during the prevention of relapse phase, and I recommend Arvigo, visceral manipulation or Clear Passage, all of which can support with adhesions. So, whoever you see, will be able to feel for adhesions and then work on them directly. Now the extent to which these massages can clear these adhesions increases in the order I listed them, so Arvigo can do some mild work on adhesions, but Clear Passage is like the cream of the crop.
However, there are also other methods for clearing adhesions, including Frequency Specific Microcurrent and neural therapy, and I’ve linked to these in the show notes, but I’ll probably do a whole episode on these at a later date too. For affordability, I would first recommend you just get assessed by a visceral manipulation therapist who can feel for any adhesions or tight areas, and then you can decide on your course of treatment.
Next up is our most common cause of the diarrhoea or mixed type SIBO, and that’s a history of food poisoning or gastroenteritis, and when I say mixed type I mean your SIBO causes you to fluctuate between diarrhoea and constipation. With these sicknesses, the body creates antibodies to attack the toxins released by the infections, but the issue is that the toxins look a lot like a protein that is a part of the interstitial cells of Cajal. The interstitial cells of Cajal are nerve cells which are responsible for the migrating motor complex, and just as a reminder, the migrating motor complex, or MMC for short, is a wave like motion that occurs in the small intestine, and clears out bacteria and old food debris, moving them into the small intestine. It’s not the movement that pushes your food into the large intestine, but it’s the movement that cleans the small intestine after the food has gone through.
So, the body creates these antibodies to attack the toxins, but accidentally attacks the MMC nerve cells because they look the same, resulting in a damaged MMC.
In cases like this, relapse is quite common because the body now has these antibodies. You can test for these antibodies with something called the IBS Smart test, which is not available in all countries, but is growing in availability. It generally is a private test and is not often something you can get on the NHS, and I’ve linked to a few places you can get this test.
Now in some cases, if the food poisoning or gastroenteritis occurred a long time ago, like in my case I had gastroenteritis when I was just a baby, then you probably won’t come up as positive for the antibodies, but the damage will still have been done. Unfortunately, many people with this root cause are often chronic, and need to stay on MMC support long-term, so that’s those pharmaceutical drugs or natural supplements which stimulate the MMC overnight, however, just clearing the SIBO itself can help the MMC to repair and improve, and there are other things you can do to lower the antibodies and repair the MMC including following autoimmune healing protocols like the AIP diet, healing leaky gut and using nerve healers like lion’s mane. These options won’t necessarily completely eliminate the antibodies or heal the MMC, but they can certainly improve things and may even do so to such an extent that with the right support and management, you can stay in remission. It’s not always the case, but it could be possible.
Alright, next up is a trio of issues that are sort of one and the same, and all affect the migrating motor complex, and I see these three issues often in my endo-SIBO clients and they are vagus nerve problems, trauma, and chronic stress.
The vagus nerve is a large nerve that travels from your brain all the way down to the base of your spine. It controls multiple functions and is responsible for your ‘rest and digest’ response and plays a leading role in digestion and stimulates the migrating motor complex . Now, the rest and digest response is the part of the nervous system that activates when we’re asleep or resting and is responsible for digestion and repair in the body. When this system isn’t on, we can’t digest food or heal – and stress turns it off, so you can see here how stress comes into play.
The vagus nerve can be damaged from trauma to the spine and head. It actually doesn’t have to be a severe injury, even just a bang on the head when playing as a child or falling on your spine can cause some damage to the nerve. But as I’ve just alluded to, the vagus nerve can also be affected or impaired by trauma or chronic stress – and for many of us with endo, just living with the condition can cause trauma and chronic stress, and statistically, many people with chronic pain conditions have a history of childhood and adolescent trauma, and this is normally the case with many of the clients I see. Now, trauma doesn’t have to be something huge and dramatic, there are multiple things that can be considered a trauma during these ages, and I’ve linked to some info in the show notes so you can have a look and do further reading if you wish to.
If the vagus nerve function is impaired, we’ll struggle to move into rest and digest and will often find that digestion is affected. But we may also have immune issues and many sensitivities, as vagus nerve impairment can affect immunity and cause a hyper reactive stress response, where our nervous system begins to see everything as a threat. In these people, I tend to see they generally feel sicker, have more sensitives and more immune problems, and it may feel like nothing is working for them.
One way to check how your vagus nerve is doing is to monitor your heart rate variability. Your heart rate variability is the variation of time between each heartbeat. There are numerous gadgets on the market that monitor your HRV, so shop around. But essentially, if you have low heart rate variability, so there isn’t much variation of time between heart beats, this is an indication that your vagus nerve isn’t doing so well, and if you have high heart rate variability, so the amount of time between each heartbeat varies, then this indicates a healthy vagus nerve.
There are simple ways to support your vagus nerve and more extensive ways, and I take my clients and students through both, but some very simple ways to begin supporting your vagus nerve includes deep breathing, yoga, singing and body work like massage. These are just some of the things that can help and are really more so the initial, simple changes, but diving into vagus nerve support is a whole episode in itself! In fact, I have whole lessons dedicated to it in my courses, but if you’re curious as to whether this is affecting your SIBO recovering, your first step could be to check your HRV.
Next on our list is another triad and this is the triad of mast cell activation syndrome, Ehlers-Danlos syndrome and postural tachycardia.
So, let’s do some quick definitions of these –
MCAS is a condition where mast cells, which contain immune cells like histamines and other inflammatory immune cells, are hypersensitive, and release histamines and other inflammatory immune cells more frequently and in larger amounts than needed. This causes problems like histamine intolerance, but also creates other inflammatory issues, and generally a person with MCAS will have a myriad of symptoms that seem random and unconnected, and often feel very unwell most of the time.
Ehlers-Danlos syndrome is a collection of syndromes that all affect connective tissue in the body, with the most common one being the hyper mobile form of EDS, which I see in a number of my clients, and is somewhat connected to endometriosis, painful periods, and heavy periods – and I have a whole podcast episode on that for those of you would like to know more.
Then finally, we have postural tachycardia, which is a condition that affects blood flow, heart rate and blood pressure when someone goes from sitting to standing, though the affects and symptoms of this condition don’t just happen when someone stands up - and can occur after exercise, or from a hot bath, hot weather, and other circumstances.
Now research is showing that POTs and MCAS are co-conditions of EDS, and so it’s important to look for all of these conditions when one of them is present.
And the keys reasons why these can cause a SIBO relapse, is because EDS can cause someone to have what’s known as ‘droopy bowels’, where basically, the intestines are floppy and collapsing, which means the MMC can’t functioning properly and move bacteria out, and the bacteria gets trapped inside. In fact, research has found that 48% of IBS patients have EDS! EDS can also cause slowed motility and affect the valve between your small and large intestine, allowing for bacteria to flow back up into the small intestine from the large – and these are just some of the ways that EDS can affect the gut and lead to SIBO.
Additionally, histamine can affect gut functioning, so excessive levels can impair recovery too, and then with POTS, because it’s a form of dysautonomia, which means it’s a dysfunction of our autonomic nervous system, the system that controls involuntary responses in our body like heartbeat and digestion, this can also suppress motility.
Finally, let’s look at hypothyroidism. Hypothyroidism is a condition where we make too little thyroid hormones, and people with endometriosis have an increased chance of developing the type of hypothyroidism that is caused by autoimmunity, known as hashimoto's thyroiditis, in fact, we are six times more likely to develop the disease (though there are ways to prevent that, which is a whole other episode, but know that everything we discuss here on this podcast generally helps!).
Hypothyroidism slows gut motility and the MMC, which can of course lead to SIBO, but if you’re able to manage your hypothyroidism well with the right levels of medication and lifestyle support, this impact could hopefully be lowered. If you have hypothyroidism already, I’ve linked to a few webinars on the link between SIBO and hypothyroidism, so you can do further research.
If you’re not sure what’s going on with your thyroid, but you struggle with fatigue, weight gain or struggle losing weight, you have constipation, dry skin, brittle hair, and hair loss, this could be a sign of hypothyroidism. Ideally, you should get a full thyroid panel, which is not often done by doctors, but I have listed some private tests in the show notes, alongside the functional medicine reference ranges for optimal levels.
Okay, so that’s it. Those are some of the most common causes for SIBO relapses in people with endo. Now, there are many risk factors for relapsing with SIBO, so these aren’t the only ones, and I have linked to some further reading and resources in the show notes, but these are some of the most common ones I see with my endo and SIBO clients. I hope that this gives you some info on what symptoms to look out for, what to check for and some starting steps on how to manage some of these issues. Please share this episode or get in touch if you found it useful!
Show Notes
IBS/endo/SIBO/causes
https://pubmed.ncbi.nlm.nih.gov/12591062/
https://pubmed.ncbi.nlm.nih.gov/12397741/
https://pubmed.ncbi.nlm.nih.gov/437407/
https://jamanetwork.com/journals/jamainternalmedicine/article-abstract/600349
https://pubmed.ncbi.nlm.nih.gov/23614961/
Adhesions
https://www.siboinfo.com/prevention-of-relapse.html
https://www.thisendolife.com/this-endolife-podcast-episodes/endo-belly-after-endometriosis-surgery?rq=adhesions
https://www.iahp.com/pages/search/index.php
https://clearpassage.com
https://www.merciertherapy.com (You currently need to email them directly for a referral)
https://www.arvigotherapy.com/team-members
https://naant.org
https://frequencyspecific.com/frequency-specific-microcurrent-practitioners/
Food poisoning
https://pubmed.ncbi.nlm.nih.gov/25970536/
https://pubmed.ncbi.nlm.nih.gov/31152332/
https://www.siboinfo.com/testing1.html - IBS Smart test links
Stress/vagus nerve/trauma
https://endometriosis.net/living/trauma-chronic-illness
https://pubmed.ncbi.nlm.nih.gov/22450306/
https://www.caringmedical.com/can-repair-vagus-nerves/
https://www.mayoclinic.org/diseases-conditions/gastroparesis/symptoms-causes/syc-20355787
https://selfhacked.com/blog/32-ways-to-stimulate-your-vagus-nerve-and-all-you-need-to-know-about-it/
https://www.jessicamaguire.com/the-vagus-nerve-masterclass
https://www.heartmath.com/science/
https://ouraring.com/blog/what-is-heart-rate-variability/
https://www.heartmath.com/tech/
https://pubmed.ncbi.nlm.nih.gov/22450306/
https://www.caringmedical.com/can-repair-vagus-nerves/
https://www.mayoclinic.org/diseases-conditions/gastroparesis/symptoms-causes/syc-20355787
EDS/MCAS/POTS
https://www.thisendolife.com/this-endolife-podcast-episodes/endometriosis-and-ehlers-danlos-syndrome-is-there-a-connection
https://www.rcgp.org.uk/clinical-and-research/resources/toolkits/ehlers-danlos-syndromes-toolkit.aspx
https://www.siboinfo.com/associated-diseases.html
https://pubmed.ncbi.nlm.nih.gov/29687534/
https://www.ehlers-danlos.com/pdf/2018-annual-conference/N-Blagowidow-2018Baltimore-OB-GYN-and-EDS-HSD-S.pdf
https://www.nhs.uk/conditions/ehlers-danlos-syndromes/
https://ehlers-danlos.com/wp-content/uploads/hEDS-Dx-Criteria-checklist-1.pdf
https://pubmed.ncbi.nlm.nih.gov/31267471/
https://www.nhs.uk/conditions/postural-tachycardia-syndrome/
https://my.clevelandclinic.org/health/diseases/6004-dysautonomia
https://join.sibosos.com/page/94124
Hypothyroidism
https://join.sibosos.com/page/94127?ref=13663
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6601386/
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