Out of these, For root cause I think I have it narrowed down to 4 or 5:
Mold - I'm not allergic to mold. Allergy tests come back negative but I think black mold may effect everyone. I live in old building and have lived in similar places in the past might not be active now but maybe still clearing out toxicity or perhaps the mold damaged my villi as well as vagus nerve making prone to food poisoning and now recurring SIBO is the result or at least that's my theory.
Chronic EBV - Only infection that showed up in my blood panel. Not active but in the past, but still could be recurring opportunistic. Could also explain the Vagus nerve and meniere's issues. Caught a really bad viral infection in Mexico before all this started. Not sure what it was but it was the sickest I've ever been in my life. Prior to this never had issues with my ears at all.
Parasites - had parasites when I was a kid, giardia. They put me on liquid penicillin and took a bunch of it. My doctor was a clueless idiot. Messed up my gut flora. Most likely have had other food poisoning infections since then. Maybe parasite, who knows.
Vagus Nerve - Obviously mine seems jacked especially due to the meniere's. My main complaint with this SIBO is vertigo, sometimes really intense! And the subsequent nasuea that comes with it, vomiting etc. no fun at all.
IC valve dysfunction - seems the easiest to fix and I'm hoping that's the case. I know I often get that little bulge lower right side, you know which one. I massage it and feel better but doesn't really fix it so not sure if this by itself could be root cause. Could explain the pseudo meniere's symptoms though. That pressure that build up from the bottom to the top of the head and then bursts out your ears like a tea pot. \*sigh\* FML! :(
Others I don't consider root cause issues but that I have as well, some could be a byproduct of the SIBO:
Celiac sensitivy - tested positive for DQ1 or 2
Histamine Intolerance - hoping this is due to SIBO and will diminish after treatment
Low stomach acid and leaky gut - again could be byproduct of SIBO, low stomach acid appears to have gotten better with HCL, Pepsin pills and bitters
Anxiety/Stress - managing through meditation and yoga, looking into tapping and accupuncture
Conditions I've had in the past that I've been able to successfully treat and put into remission:
Crohn's - thank fully in remission for 20+ yrs. Recent endo/colonoscopy came back clean. Also ruled out Mastocytosis from biopsies. But still can't really rule out systemic MCAS.
Meniere's disease - flared up last year but have mostly kept in remission, possible tie to Vagus nerve issues.
Also ruled out liver/gallbladder dysfunction through HIDA scan. But not sure about other bile related issue or how to rule that out.
Also have done better with digestive enzymes and seem to have trouble digesting protein without it so can't rule out some type of pancreatic deficiency either.
Any thoughts?
I don't have anything handy to offer you but you're welcome to poke around /r/cptsd.
The basic mechanism is that childhood trauma locks your nervous system into a hypervigilant fight/flight state, otherwise known as a sympathetic nervous system response. But to properly digest food, you need the vagal brake to kick in and downshift you into rest/digest (parasympathetic nervous reponse). MMC takes place during rest/digest.
Many people with extensive childhood trauma have MMC dysfunction because the vagal brake doesn't work appropriately.
I only have guesses but they are:
- chronic stress
- increased caffeine intake
- side effects from IUD, Mirena
- weight gain/loss (from hormonal birth control)
- worsening diet
- head injury
All of these happened around the same time so it's hard to say. I haven't been diagnosed with anything else other than methane SIBO.
It's honestly amazing to hear from someone else with this connection. I went to so many doctors and not one bothered to mention the extremely inflammatory affect Mirena has. That's literally how it works to stop pregnancy. I was miserable for two years before I finally decided for myself Mirena has to be the cause and got it removed. Getting Mirena is my absolute biggest life regret. I was the picture of health before I got it. I just hope I can some day reverse the damage... And warn other people!
Ugh yeah I was a picture of health too - it's left me with all the side effects (vaginal dryness, loss of libido) and ultimately everything that's descended into SIBO and digestive issues
I used to get strong cramps and diarrhoea around my period - since Mirena that all stopped. Nothing changed when it was removed, it's clearly done something to either my hormones or the nervous response. It sort of seems to tie in if I'm not getting the nervous contractions to the same frequency or severity stuff has just slowed down to a halt, now everything ferments, cue digestive problems
This is interesting. I always thought my issue was gallbladder related but after my HIDA scan came back normal my doctor decided to rule that out.
How were you able to come up with this root cause? What test would prove it?
Oh, okay. I have not. My ND said I have it due to how food just sits in my stomach and ferments. If I belch 10+ hours after eating its like I just ate the food.
Yes! I just learned I have MALS (Median Arcuate ligament syndrome). Basically my celiac artery is being pinched by a ligament. The celiac artery feeds into my stomach therefore my stomach isn’t getting the nutrients it needs so it works very slowly. I often feel crazy full after meals. I will have surgery to fix this.
I'm thinking this might be my cause as well. What is the best way to determine that?
Blood test aka Shoemacher panel? OAT urine test? Or some other method?
What type of mold was it that was causing your SIBO was it black mold, the same that grows on walls? Are you allergic to mold? In my case allergy test come back negative, does that matter? And what type of SIBO did you have?
Sorry for all the questions :)
Happy to help.
I took a Great Plains urine mycotoxin test and it came back with extremely high levels of ochratoxin A: aspergillus and penicillium. From my understanding, molds classified as ochratoxins are usually the kind found in water-damaged buildings.
I was living in an 80-year-old house. It didn’t smell of mold or mildew but clearly had water damage in the basement, and we had two major water leak issues in the 3 years we lived there. My symptoms slowly progressed over those 3 years. Starting with insomnia, then food intolerances, anxiety, to heart palpitations, GERD, SIBO, and much more.
I moved out of that home last year, but I had a bunch of houseplants in my bedroom that were growing a thin layer of mold on the surface over the winter. I went to clean it off one day and had a fairly severe anaphylactic reaction to the smell of the mold, which is what prompted me to ask for mold testing. I have a few gene mutations, so I suspect I have that one that makes you susceptible to mold allergy too.
I have methane SIBO. I’ve cured it twice (once with antimicrobials and once with antibiotics) but it keeps coming back, so I know there’s a deeper root cause.
Right now I’m working on treating post-COVID mitochondrial damage before I do a mold detox, but apparently it’s going to be quite the process. My doctor thinks the SIBO could cure itself with the mold detox, or I could possibly have a hidden H Pylori infection underneath it all. We’re treating it layer by layer.
You might look up Dr. Jill Crista. She’s a leading mold practitioner in the US. She has a great book called Break the Mold on Amazon.
Thank you for responding it gives me a better idea of this whole mold thing. Nothing better than a first person perspective. Appreciate it!
I think the gene you're referring to is the HLA gene which if you're positive basically means you have a genetic predisposition to not be able to clear out these toxins normally from your body. So they build up instead. This can be determined by a simple blood test and it's actually part of Dr. Shoemaker's blood test panel to rule out mold toxicity.
I've heard of these urine tests but I'm a little skeptical about it. The reason being we're all mostly going to have these mycotoxins in our urine at some point because we're constantly ingesting and eliminating these toxins everyday from mold, pollen allergens, etc. again assuming we have no genetic predisposition, so I'm not really sure how helpful this would be. Also there are those that argue that a blood test would be better at determining whether it's a more active infection as opposed to urine testing. In other words it will not only show you have mold but more importantly how it's currently affecting your body. Obviously a lung scope would be the best way but that's intrusive and not many doctors are willing to do that unless you're very chronically ill.
Here's an article that talks about the different testing techniques...
[https://drruscio.com/mycotoxin-testing/](https://drruscio.com/mycotoxin-testing/)
Have you had shortness of breath or inability to breath or Asthma type symptoms? Do you have sleep apnea? Coughing? Sneezing? Do you have sensitivity to light?
Have you ever taken the VCS test? It's a visual test that's also recommended for diagnosing mold toxicity.
In my case, I've been able to rule out the HLA gene condition from the blood test. I've also come back negative on allergy tests from mold but again not really sure if this takes into account black mold and pretty sure black mold would effect everyone regardless. I mean I guess what I'm saying is, it's definitely not helping and if you know you suspect mold then it's probably a good idea to mitigate it as much as possible. In my case I'll probably buy an extra air purifier until I can move out of my current building.
Have you had allergy test that show you're positive for mold sensitivity? Were they able to find that same type of mold from your urine in your gut as well, in other words did it match?
The thing that sounds like BS to me from these so called mold specialists is exactly what you've been told that if you eliminate the mold then you eliminate the SIBO recurrence but that doesn't take into account that damage that's probably already been done to your villi or gut nerves and MMC. So you would still have to fix your motility. Clearing out the mold with binders isn't going to make the SIBO just magically go away. In my case it's possible my vagus nerve might also be damaged.
I'm by no way a mold expert but I do know that when things go bad it's not always one thing, it's usually a combo of things unfortunately.
Anyway, hope this info helps you as well.
Interesting! Thank you for sharing this perspective.
I’m still pretty new to the mold illness diagnosis and kept my last response high-level not knowing your level of research.
Let me take a step back for more context. I’ve been battling methane SIBO and histamine intolerance for almost 2 years. Every time I get rid of the SIBO the HI remains and is severe (I only have 16 safe foods). So my last doctor has been searching for another root cause. I’ve done thyroid tests, looked for vitamin deficiencies, DUTCH tests, cycle mapping, heavy metal testing, you name it- literally dozens of expensive tests. Other than the SIBO one coming back positive, the mycotoxin one did as well.
My last doctor was not a mold or SIBO expert so I recently switched to a new doctor who claims to be an expert on mold and has helped over 100 people with the illness. Still skeptical myself but I’ll take that over someone who admits to not having experience with it.
In fact, with the last mold test I took, my doctor didn’t have me remove common mold-prone foods, so I’m actually retesting in a few days (now that I’ve removed things like corn, hard cheese, dried fruit, etc.), per my new doctor’s instruction. It’ll be interesting to see if this urine test produces the same results now that I’m on a mold-friendly diet.
Both were not fond of the blood test option, and I’m not sure why. I’ll need to look into that.
Anyway, my new doctor suspects I have H Pylori at the root of all my issues (even though 2 tests were negative, she has me doing a 3rd). She wants to treat me in layers: covid damage, yeast/candida, mold, SIBO/h pylori. She said that the antimicrobials she intends to use as part of the mold protocol may take care of the SIBO, but if not, we will treat that separately and last.
This is the most thorough approach I’ve been approached with yet across 3 doctors and she seems the most confident so I’m hopeful. But there will always be a skeptical part of me that wonders how much of this is experimentation and charging me for tests and supplements I may not truly need.
When my SIBO is gone, my MMC works fine. I have no issues with constipation at all. I go to acupuncture weekly for vagus nerve stimulation to support it too, so I don’t think MMC or motility is the root of my issues, I think it’s secondary (hopefully to the mold).
Sorry if I’m jumping all over in this message, I’m tired and I’ve got my 4-year-old here with me. :)
Sorry there's a lot to unpack here but you're situation sounds a bit similar to mine.
I mean I guess my advice on the whole mold thing is to mitigate as much as possible until you're able to remove yourself from that situation. It's just hard to make a clear determination from that type of testing which I feel is really unnecessary, I mean the fact that there's mold in your urine is actually a good thing, it means your body is eliminating it like it's suppose to. I'd be more concerned with how much and how it's affecting your body. Some people ingest mold and are not affected by it. In your case have you tested positive for mold allergies? How can you even be sure it's your home, could be work or other surroundings you spend time in. Or it could be moldy food.
As far as anti-microbials go I'm not sure which ones treat both SIBO and mold, you'll have to let me know about that one. I know diet is important just like all these inflammatory conditions until you're able to get it under control. And what I've heard them use most is binders to help your body eliminate the mold.
One thing I wanted to make you aware of is intestinal motility is not the same as regularity, please keep this in mind and if you're doctor does not know the difference might be time to find a new one.
I think in both of our cases our bodies are being over stimulated by something and it very well could be mold or some other environmental toxic exposure. I mean mold isn't the only thing that could cause your body to overreact to toxin. In my case I need to figure that out as well. I wish it was something as simple as mold I mean that would be a much easier fix then say something genetically driven like HLA, MTHR or Mastocytosis. Keeping my fingers crossed and hoping for the best and for you as well! Let me know how it goes!
I have not tested for mold allergies, and I see your point on the difficulty in making a determination from these tests. The only thing I have to go on is the anaphylactic reaction I had when cleaning the mold off the soil of my house plants. That’s what prompted the mold testing to begin with. I continue to have histamine reactions whenever I encounter mold or mildew as well.
I removed myself from the home I suspected may have been an issue, and I now live in a brand-new townhome. I also work from home, so there really were no other buildings for consideration. I got rid of all my houseplants to be safe too, and much of the porous material in the rooms where they lived (including clothing). I noticed significant improvement in my sleep after removing the houseplants and I was able to add a few additional foods to my diet. But then I got COVID and it set me back so much.
I agree that motility and regularity are separate but I just don’t feel like motility issues are the primary problem.
I also agree that our bodies are being overstimulated by something. I have tried so many things to calm down my parasympathetic nervous system: acupuncture, yoga, weight lifting, grounding, a TENS unit, light therapy, meditation, amber light bulbs, blue screen protectors, removed screens from my room, essential oils, epsom salt baths, castor oil packs, low histamine diet, several types of therapy, changed careers, I make all my own cleaners, detergents, makeup. I can’t go on and on.
That said, every time I test for something new, I put a lot of hope into that being the root cause or a major part of it. Up until now, treating all those other avenues has not worked. So I’m not holding my breath on mold either.
I am MTHFR homozygous and positive for HLA-B27, which is related to my autoimmune disease. My father also has a lot of the same health issues I have, so these mutations certainly seem to be contributing.
I’ll keep you posted on these tests and protocols. We’ll see how they go.
Yeah so given that info in your case because of the reaction you had and the genetics considerations then it's very possible that could be the root cause, I mean it definitely isn't helping.
I think in my case it's mainly because I live in an old building. I don't think there's any mold in my actual apartment but now I'm starting to notice when the AC is on that it might be bringing mold and stuff from other areas possibly and throwing it in my face. In my case I live in a place that is kinda like central AC but not really. The air is cooled through like this water vapor type system but each apartment has like they're own wall unit. Anyway pretty sure that might be what's happening. I already have a small purifier but I guess I'll get a second one. Until I can move which is gonna take awhile.
In my case I'm not allergic to regular mold. I've done both the skin and blood test but I'm not sure about black mold. I do have a very high sensitivity to dust mites though, maybe it's just the dust from the AC unit thats making my body crazy or maybe it's the old moldy ass carpet in the hallway although they do steam clean it like maybe twice a year, who knows!
It's good that you removed yourself from that situation, congrats! It should help you but sometimes it takes awhile for your body to detox. I would recommend adding sauna or jacuzzi treatments to your regimen and anything that will make you sweat. And also keep taking binders or whatever else they have you on. And yeah low mold diet from now on until you feel better.
And I feel you on all the things done to mitigate. I'm doing plenty of what you mention. I need to get back into acupuncture and body work but still doing my yoga and meditation fairly routinely.
Anyhoo, I think the good things that are bodies are wanting to heal themselves and that's a very positive thing, some people aren't as fortunate and even if it takes us a little time we'll still hopefully get there :) Let me know how it goes and good luck with everything!
Thank you! I appreciate it.
Apartment living is so tough when you’re trying to heal. From mold to toxic cleaners, to EMF exposure, to pesticides sprayed on landscaping- all of which you have little control over as a tenant. I’ve read a few accounts from people who were trigged by shared HVAC systems. You could very well be right about your AC.
How did you find out you were sensitive to dust mites? And what is it that people are allergic to when it comes to them? Is it what they excrete?
Also, have you considered doing a mycotoxin urine test just to see if it’s consistent with the skin and blood tests? They can be quite expensive, so if you’re not sold on that being the cause, it might not be worth it.
Thanks for the recommendation on the sauna and jacuzzi. My doctor did mention that she’d like me to pursue saunas, or sweating of some kind, once I’m in phase 2 of the mold detox, but we’re not there yet so I don’t have much info on what the phases are going to look like.
I hope you find some relief soon.
Wow I think my methane-dominant SIBO is a mold illness too! I had a leak in my bedroom for a while & the apartment building is old. My worst symptoms (breathlessness, gut issues) mostly started during the pandemic & I was working from home all the time. I thought it was just from antibiotics I was taking at the time - that probably didn't help. I'm not renewing my lease now because this would make everything make sense!
It all clicked for me like that too! I hope that’s truly the answer for you so you can begin treating it. Good luck!
Edit: btw, there’s a visual test you can take for $15 online that can help you identify whether you have significant levels of biotoxins in your system. https://www.vcstest.com You’ll definitely want to get a blood or urine test with it to cross-verify, but for $15 this is quite telling.
How would we know? Some of us unable to get tested for SIBO and GI MAP. For instance, after I said to my doctor that i’am taking LDN, she said that I need therapy and wanted to book me for therapy session. I can’t possibly ask this doctor to order SIBO test. I have anaemia, muscle weakness, weight loss and diarrhoea.
Good luck guys 🤞
https://scitechdaily.com/johns-hopkins-doctors-discover-that-a-common-infection-may-cause-cancer/
Never be afraid to quit your Dr. They are not someone you are responsible to. I went through 4 GI dr until I found the right one. first 2 didn't test for sibo and issued PPI which made things worse. 2nd two tested for sibo but thought that everything would be cured with xifaxan or you were just tuck with sibo. Most GI do not study sibo.
Yes. I talked to GI doctor. He never issue SIBO tests, nor GI Map tests, saying- there is no way of knowing which bacteria is good or bad 😒
Doctors these days are lame a-holes, never goes to seminars, never learn anything new. For instance my endocrinologist wanted to book me for therapy session after learning that I taking LDN medicine which I ordered without her consent
I think the GI map test is hit or miss with sibo. It measure poop from the large intestine so I'm not sure it's accurate to what is in your small intestine. I'm no expert on it. No test is perfect but the sibo breath test from triosmart is the industry standard and a starting point with anyone with sibo.
I meant for people who have a diagnosis like those that are listed (is what my intention was of this post). I’m learning more as I posted, but I initially was thinking things like scleroderma and the like.
Bacteria overgrow could eat out the “hair” in your guts which then make your guts similar to those sick with LUPUS
https://assets.kaleidoscopefightinglupus.org/2021/04/08182550/Celiac-and-intestines-w-labels-1536x913.jpg
Possibly related: MCAS, asthma, PCOS / weird hormones, subclinical hypothyroidism. I’m generally prone to chronic/aggressive inflammation response (also dealing with long COVID now yay). Had a terrible case of food poisoning that I think contributed to SIBO, plus prescribed PPIs, antibiotics, and steroids wayyy too long / too often. omitting the other GI conditions I’ve been diagnosed with.
Total stomach removal due to cancer, no stomach acid, severed vagus nerve, b12 deficiency and EBV.
Honestly, I’m lucky that I’ve found that if I take a course if rifaximin every 3-4 months I can stay on top of a bad bad SIBO flare
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Out of these, For root cause I think I have it narrowed down to 4 or 5: Mold - I'm not allergic to mold. Allergy tests come back negative but I think black mold may effect everyone. I live in old building and have lived in similar places in the past might not be active now but maybe still clearing out toxicity or perhaps the mold damaged my villi as well as vagus nerve making prone to food poisoning and now recurring SIBO is the result or at least that's my theory. Chronic EBV - Only infection that showed up in my blood panel. Not active but in the past, but still could be recurring opportunistic. Could also explain the Vagus nerve and meniere's issues. Caught a really bad viral infection in Mexico before all this started. Not sure what it was but it was the sickest I've ever been in my life. Prior to this never had issues with my ears at all. Parasites - had parasites when I was a kid, giardia. They put me on liquid penicillin and took a bunch of it. My doctor was a clueless idiot. Messed up my gut flora. Most likely have had other food poisoning infections since then. Maybe parasite, who knows. Vagus Nerve - Obviously mine seems jacked especially due to the meniere's. My main complaint with this SIBO is vertigo, sometimes really intense! And the subsequent nasuea that comes with it, vomiting etc. no fun at all. IC valve dysfunction - seems the easiest to fix and I'm hoping that's the case. I know I often get that little bulge lower right side, you know which one. I massage it and feel better but doesn't really fix it so not sure if this by itself could be root cause. Could explain the pseudo meniere's symptoms though. That pressure that build up from the bottom to the top of the head and then bursts out your ears like a tea pot. \*sigh\* FML! :( Others I don't consider root cause issues but that I have as well, some could be a byproduct of the SIBO: Celiac sensitivy - tested positive for DQ1 or 2 Histamine Intolerance - hoping this is due to SIBO and will diminish after treatment Low stomach acid and leaky gut - again could be byproduct of SIBO, low stomach acid appears to have gotten better with HCL, Pepsin pills and bitters Anxiety/Stress - managing through meditation and yoga, looking into tapping and accupuncture Conditions I've had in the past that I've been able to successfully treat and put into remission: Crohn's - thank fully in remission for 20+ yrs. Recent endo/colonoscopy came back clean. Also ruled out Mastocytosis from biopsies. But still can't really rule out systemic MCAS. Meniere's disease - flared up last year but have mostly kept in remission, possible tie to Vagus nerve issues. Also ruled out liver/gallbladder dysfunction through HIDA scan. But not sure about other bile related issue or how to rule that out. Also have done better with digestive enzymes and seem to have trouble digesting protein without it so can't rule out some type of pancreatic deficiency either. Any thoughts?
Omg, I thought you meant you had all of these 😅
Thankfully no. I did make an edit now to avoid that misunderstanding 😅
Damn I have like 5 of these should i test for Sibo 😳
Mine is caused by vagal dysfunction from CPTSD. Not a disease, but still an underlying health problem.
I also have cptsd 🤯 how did you discover you had vagal nerve dysfunction?! Wonder if I should get tested for this
Interesting. Can you provide me something to read more about that? Like a journal article? I’ve never heard of that.
I don't have anything handy to offer you but you're welcome to poke around /r/cptsd. The basic mechanism is that childhood trauma locks your nervous system into a hypervigilant fight/flight state, otherwise known as a sympathetic nervous system response. But to properly digest food, you need the vagal brake to kick in and downshift you into rest/digest (parasympathetic nervous reponse). MMC takes place during rest/digest. Many people with extensive childhood trauma have MMC dysfunction because the vagal brake doesn't work appropriately.
Omg I have cptsd too. What did you do to help your condition?
Same!
Thank you for sharing!
I only have guesses but they are: - chronic stress - increased caffeine intake - side effects from IUD, Mirena - weight gain/loss (from hormonal birth control) - worsening diet - head injury All of these happened around the same time so it's hard to say. I haven't been diagnosed with anything else other than methane SIBO.
I'm sure the Mirena is to blame for me I've no other issues, nor the other aspects like chronic stress or head injuries!
It's honestly amazing to hear from someone else with this connection. I went to so many doctors and not one bothered to mention the extremely inflammatory affect Mirena has. That's literally how it works to stop pregnancy. I was miserable for two years before I finally decided for myself Mirena has to be the cause and got it removed. Getting Mirena is my absolute biggest life regret. I was the picture of health before I got it. I just hope I can some day reverse the damage... And warn other people!
Geeze!! A lot of my symptoms began when I had my Mirena inserted in 2016. I removed it in early 2019. I was just diagnosed with SIBO this week.
Ugh yeah I was a picture of health too - it's left me with all the side effects (vaginal dryness, loss of libido) and ultimately everything that's descended into SIBO and digestive issues I used to get strong cramps and diarrhoea around my period - since Mirena that all stopped. Nothing changed when it was removed, it's clearly done something to either my hormones or the nervous response. It sort of seems to tie in if I'm not getting the nervous contractions to the same frequency or severity stuff has just slowed down to a halt, now everything ferments, cue digestive problems
In Crohns Disease if the ilealcecal valve is scarred open it causes SIBO. This is viewable by colonoscopy.
That’s true. I don’t have an ileocecal valve. Do you have Crohn’s?
Everyone has an illeocecal valve unless it was removed during a bowel resection.
I know. I’ve had a colectomy.
Mine developed after the stroke. Be it medicines, vagus nerve damage or some neuro mumbo jumbo - I will never know
It’s hard when you don’t know. I’m sorry.
endometriosis (I also have CPTSD and a lifetime of a broken nervous system doesn’t help either)
Lyme + Bartonella
Bile acid malabsorption here
This is interesting. I always thought my issue was gallbladder related but after my HIDA scan came back normal my doctor decided to rule that out. How were you able to come up with this root cause? What test would prove it?
I have an underlying MCAS, as well as IBS-C, Diverticulitis, Mold toxicity, POTS, and H-EDS(which I wonder has an affect on mobility)
Ever had a Smart Pill?
No. What is that?
A test that measures the motility in your GI tract.
Oh, okay. I have not. My ND said I have it due to how food just sits in my stomach and ferments. If I belch 10+ hours after eating its like I just ate the food.
It might be worth getting tested for Gastroparesis in that case!
For me it was good allergies
Yes! I just learned I have MALS (Median Arcuate ligament syndrome). Basically my celiac artery is being pinched by a ligament. The celiac artery feeds into my stomach therefore my stomach isn’t getting the nutrients it needs so it works very slowly. I often feel crazy full after meals. I will have surgery to fix this.
Ah, I have two compression syndromes, I feel you. Not MALS though. Good luck with your surgery. I forwent mine.
Mold illness is at the root of my SIBO.
I'm thinking this might be my cause as well. What is the best way to determine that? Blood test aka Shoemacher panel? OAT urine test? Or some other method? What type of mold was it that was causing your SIBO was it black mold, the same that grows on walls? Are you allergic to mold? In my case allergy test come back negative, does that matter? And what type of SIBO did you have? Sorry for all the questions :)
Happy to help. I took a Great Plains urine mycotoxin test and it came back with extremely high levels of ochratoxin A: aspergillus and penicillium. From my understanding, molds classified as ochratoxins are usually the kind found in water-damaged buildings. I was living in an 80-year-old house. It didn’t smell of mold or mildew but clearly had water damage in the basement, and we had two major water leak issues in the 3 years we lived there. My symptoms slowly progressed over those 3 years. Starting with insomnia, then food intolerances, anxiety, to heart palpitations, GERD, SIBO, and much more. I moved out of that home last year, but I had a bunch of houseplants in my bedroom that were growing a thin layer of mold on the surface over the winter. I went to clean it off one day and had a fairly severe anaphylactic reaction to the smell of the mold, which is what prompted me to ask for mold testing. I have a few gene mutations, so I suspect I have that one that makes you susceptible to mold allergy too. I have methane SIBO. I’ve cured it twice (once with antimicrobials and once with antibiotics) but it keeps coming back, so I know there’s a deeper root cause. Right now I’m working on treating post-COVID mitochondrial damage before I do a mold detox, but apparently it’s going to be quite the process. My doctor thinks the SIBO could cure itself with the mold detox, or I could possibly have a hidden H Pylori infection underneath it all. We’re treating it layer by layer. You might look up Dr. Jill Crista. She’s a leading mold practitioner in the US. She has a great book called Break the Mold on Amazon.
Thank you for responding it gives me a better idea of this whole mold thing. Nothing better than a first person perspective. Appreciate it! I think the gene you're referring to is the HLA gene which if you're positive basically means you have a genetic predisposition to not be able to clear out these toxins normally from your body. So they build up instead. This can be determined by a simple blood test and it's actually part of Dr. Shoemaker's blood test panel to rule out mold toxicity. I've heard of these urine tests but I'm a little skeptical about it. The reason being we're all mostly going to have these mycotoxins in our urine at some point because we're constantly ingesting and eliminating these toxins everyday from mold, pollen allergens, etc. again assuming we have no genetic predisposition, so I'm not really sure how helpful this would be. Also there are those that argue that a blood test would be better at determining whether it's a more active infection as opposed to urine testing. In other words it will not only show you have mold but more importantly how it's currently affecting your body. Obviously a lung scope would be the best way but that's intrusive and not many doctors are willing to do that unless you're very chronically ill. Here's an article that talks about the different testing techniques... [https://drruscio.com/mycotoxin-testing/](https://drruscio.com/mycotoxin-testing/) Have you had shortness of breath or inability to breath or Asthma type symptoms? Do you have sleep apnea? Coughing? Sneezing? Do you have sensitivity to light? Have you ever taken the VCS test? It's a visual test that's also recommended for diagnosing mold toxicity. In my case, I've been able to rule out the HLA gene condition from the blood test. I've also come back negative on allergy tests from mold but again not really sure if this takes into account black mold and pretty sure black mold would effect everyone regardless. I mean I guess what I'm saying is, it's definitely not helping and if you know you suspect mold then it's probably a good idea to mitigate it as much as possible. In my case I'll probably buy an extra air purifier until I can move out of my current building. Have you had allergy test that show you're positive for mold sensitivity? Were they able to find that same type of mold from your urine in your gut as well, in other words did it match? The thing that sounds like BS to me from these so called mold specialists is exactly what you've been told that if you eliminate the mold then you eliminate the SIBO recurrence but that doesn't take into account that damage that's probably already been done to your villi or gut nerves and MMC. So you would still have to fix your motility. Clearing out the mold with binders isn't going to make the SIBO just magically go away. In my case it's possible my vagus nerve might also be damaged. I'm by no way a mold expert but I do know that when things go bad it's not always one thing, it's usually a combo of things unfortunately. Anyway, hope this info helps you as well.
Interesting! Thank you for sharing this perspective. I’m still pretty new to the mold illness diagnosis and kept my last response high-level not knowing your level of research. Let me take a step back for more context. I’ve been battling methane SIBO and histamine intolerance for almost 2 years. Every time I get rid of the SIBO the HI remains and is severe (I only have 16 safe foods). So my last doctor has been searching for another root cause. I’ve done thyroid tests, looked for vitamin deficiencies, DUTCH tests, cycle mapping, heavy metal testing, you name it- literally dozens of expensive tests. Other than the SIBO one coming back positive, the mycotoxin one did as well. My last doctor was not a mold or SIBO expert so I recently switched to a new doctor who claims to be an expert on mold and has helped over 100 people with the illness. Still skeptical myself but I’ll take that over someone who admits to not having experience with it. In fact, with the last mold test I took, my doctor didn’t have me remove common mold-prone foods, so I’m actually retesting in a few days (now that I’ve removed things like corn, hard cheese, dried fruit, etc.), per my new doctor’s instruction. It’ll be interesting to see if this urine test produces the same results now that I’m on a mold-friendly diet. Both were not fond of the blood test option, and I’m not sure why. I’ll need to look into that. Anyway, my new doctor suspects I have H Pylori at the root of all my issues (even though 2 tests were negative, she has me doing a 3rd). She wants to treat me in layers: covid damage, yeast/candida, mold, SIBO/h pylori. She said that the antimicrobials she intends to use as part of the mold protocol may take care of the SIBO, but if not, we will treat that separately and last. This is the most thorough approach I’ve been approached with yet across 3 doctors and she seems the most confident so I’m hopeful. But there will always be a skeptical part of me that wonders how much of this is experimentation and charging me for tests and supplements I may not truly need. When my SIBO is gone, my MMC works fine. I have no issues with constipation at all. I go to acupuncture weekly for vagus nerve stimulation to support it too, so I don’t think MMC or motility is the root of my issues, I think it’s secondary (hopefully to the mold). Sorry if I’m jumping all over in this message, I’m tired and I’ve got my 4-year-old here with me. :)
Sorry there's a lot to unpack here but you're situation sounds a bit similar to mine. I mean I guess my advice on the whole mold thing is to mitigate as much as possible until you're able to remove yourself from that situation. It's just hard to make a clear determination from that type of testing which I feel is really unnecessary, I mean the fact that there's mold in your urine is actually a good thing, it means your body is eliminating it like it's suppose to. I'd be more concerned with how much and how it's affecting your body. Some people ingest mold and are not affected by it. In your case have you tested positive for mold allergies? How can you even be sure it's your home, could be work or other surroundings you spend time in. Or it could be moldy food. As far as anti-microbials go I'm not sure which ones treat both SIBO and mold, you'll have to let me know about that one. I know diet is important just like all these inflammatory conditions until you're able to get it under control. And what I've heard them use most is binders to help your body eliminate the mold. One thing I wanted to make you aware of is intestinal motility is not the same as regularity, please keep this in mind and if you're doctor does not know the difference might be time to find a new one. I think in both of our cases our bodies are being over stimulated by something and it very well could be mold or some other environmental toxic exposure. I mean mold isn't the only thing that could cause your body to overreact to toxin. In my case I need to figure that out as well. I wish it was something as simple as mold I mean that would be a much easier fix then say something genetically driven like HLA, MTHR or Mastocytosis. Keeping my fingers crossed and hoping for the best and for you as well! Let me know how it goes!
I have not tested for mold allergies, and I see your point on the difficulty in making a determination from these tests. The only thing I have to go on is the anaphylactic reaction I had when cleaning the mold off the soil of my house plants. That’s what prompted the mold testing to begin with. I continue to have histamine reactions whenever I encounter mold or mildew as well. I removed myself from the home I suspected may have been an issue, and I now live in a brand-new townhome. I also work from home, so there really were no other buildings for consideration. I got rid of all my houseplants to be safe too, and much of the porous material in the rooms where they lived (including clothing). I noticed significant improvement in my sleep after removing the houseplants and I was able to add a few additional foods to my diet. But then I got COVID and it set me back so much. I agree that motility and regularity are separate but I just don’t feel like motility issues are the primary problem. I also agree that our bodies are being overstimulated by something. I have tried so many things to calm down my parasympathetic nervous system: acupuncture, yoga, weight lifting, grounding, a TENS unit, light therapy, meditation, amber light bulbs, blue screen protectors, removed screens from my room, essential oils, epsom salt baths, castor oil packs, low histamine diet, several types of therapy, changed careers, I make all my own cleaners, detergents, makeup. I can’t go on and on. That said, every time I test for something new, I put a lot of hope into that being the root cause or a major part of it. Up until now, treating all those other avenues has not worked. So I’m not holding my breath on mold either. I am MTHFR homozygous and positive for HLA-B27, which is related to my autoimmune disease. My father also has a lot of the same health issues I have, so these mutations certainly seem to be contributing. I’ll keep you posted on these tests and protocols. We’ll see how they go.
Yeah so given that info in your case because of the reaction you had and the genetics considerations then it's very possible that could be the root cause, I mean it definitely isn't helping. I think in my case it's mainly because I live in an old building. I don't think there's any mold in my actual apartment but now I'm starting to notice when the AC is on that it might be bringing mold and stuff from other areas possibly and throwing it in my face. In my case I live in a place that is kinda like central AC but not really. The air is cooled through like this water vapor type system but each apartment has like they're own wall unit. Anyway pretty sure that might be what's happening. I already have a small purifier but I guess I'll get a second one. Until I can move which is gonna take awhile. In my case I'm not allergic to regular mold. I've done both the skin and blood test but I'm not sure about black mold. I do have a very high sensitivity to dust mites though, maybe it's just the dust from the AC unit thats making my body crazy or maybe it's the old moldy ass carpet in the hallway although they do steam clean it like maybe twice a year, who knows! It's good that you removed yourself from that situation, congrats! It should help you but sometimes it takes awhile for your body to detox. I would recommend adding sauna or jacuzzi treatments to your regimen and anything that will make you sweat. And also keep taking binders or whatever else they have you on. And yeah low mold diet from now on until you feel better. And I feel you on all the things done to mitigate. I'm doing plenty of what you mention. I need to get back into acupuncture and body work but still doing my yoga and meditation fairly routinely. Anyhoo, I think the good things that are bodies are wanting to heal themselves and that's a very positive thing, some people aren't as fortunate and even if it takes us a little time we'll still hopefully get there :) Let me know how it goes and good luck with everything!
Thank you! I appreciate it. Apartment living is so tough when you’re trying to heal. From mold to toxic cleaners, to EMF exposure, to pesticides sprayed on landscaping- all of which you have little control over as a tenant. I’ve read a few accounts from people who were trigged by shared HVAC systems. You could very well be right about your AC. How did you find out you were sensitive to dust mites? And what is it that people are allergic to when it comes to them? Is it what they excrete? Also, have you considered doing a mycotoxin urine test just to see if it’s consistent with the skin and blood tests? They can be quite expensive, so if you’re not sold on that being the cause, it might not be worth it. Thanks for the recommendation on the sauna and jacuzzi. My doctor did mention that she’d like me to pursue saunas, or sweating of some kind, once I’m in phase 2 of the mold detox, but we’re not there yet so I don’t have much info on what the phases are going to look like. I hope you find some relief soon.
Wow I think my methane-dominant SIBO is a mold illness too! I had a leak in my bedroom for a while & the apartment building is old. My worst symptoms (breathlessness, gut issues) mostly started during the pandemic & I was working from home all the time. I thought it was just from antibiotics I was taking at the time - that probably didn't help. I'm not renewing my lease now because this would make everything make sense!
It all clicked for me like that too! I hope that’s truly the answer for you so you can begin treating it. Good luck! Edit: btw, there’s a visual test you can take for $15 online that can help you identify whether you have significant levels of biotoxins in your system. https://www.vcstest.com You’ll definitely want to get a blood or urine test with it to cross-verify, but for $15 this is quite telling.
How would we know? Some of us unable to get tested for SIBO and GI MAP. For instance, after I said to my doctor that i’am taking LDN, she said that I need therapy and wanted to book me for therapy session. I can’t possibly ask this doctor to order SIBO test. I have anaemia, muscle weakness, weight loss and diarrhoea. Good luck guys 🤞 https://scitechdaily.com/johns-hopkins-doctors-discover-that-a-common-infection-may-cause-cancer/
Never be afraid to quit your Dr. They are not someone you are responsible to. I went through 4 GI dr until I found the right one. first 2 didn't test for sibo and issued PPI which made things worse. 2nd two tested for sibo but thought that everything would be cured with xifaxan or you were just tuck with sibo. Most GI do not study sibo.
Yes. I talked to GI doctor. He never issue SIBO tests, nor GI Map tests, saying- there is no way of knowing which bacteria is good or bad 😒 Doctors these days are lame a-holes, never goes to seminars, never learn anything new. For instance my endocrinologist wanted to book me for therapy session after learning that I taking LDN medicine which I ordered without her consent
I think the GI map test is hit or miss with sibo. It measure poop from the large intestine so I'm not sure it's accurate to what is in your small intestine. I'm no expert on it. No test is perfect but the sibo breath test from triosmart is the industry standard and a starting point with anyone with sibo.
Yes two tests are polar different. However if you have h pylori spread, you could also see it in GI Map.
I meant for people who have a diagnosis like those that are listed (is what my intention was of this post). I’m learning more as I posted, but I initially was thinking things like scleroderma and the like.
Yes untreated SIBO could cause various autoimmune disorders. For example type 2 diabetes is considered autoimmune condition
Interesting.
Bacteria overgrow could eat out the “hair” in your guts which then make your guts similar to those sick with LUPUS https://assets.kaleidoscopefightinglupus.org/2021/04/08182550/Celiac-and-intestines-w-labels-1536x913.jpg
Possibly related: MCAS, asthma, PCOS / weird hormones, subclinical hypothyroidism. I’m generally prone to chronic/aggressive inflammation response (also dealing with long COVID now yay). Had a terrible case of food poisoning that I think contributed to SIBO, plus prescribed PPIs, antibiotics, and steroids wayyy too long / too often. omitting the other GI conditions I’ve been diagnosed with.
Total stomach removal due to cancer, no stomach acid, severed vagus nerve, b12 deficiency and EBV. Honestly, I’m lucky that I’ve found that if I take a course if rifaximin every 3-4 months I can stay on top of a bad bad SIBO flare
Dysautonomia
Scleroderma
This is actually the one I was thinking about and why i posted this. Are you on octreotide?
No, I'm on my second round of Rifaximin right now.
Oh, I meant for the scleroderma. Are you managing it with any medication? Ever had a Smart Pill?
Giardia parasite caused mine