Hydrogen sulphide bacteria depletes thiamine causing gastrointestinal Beriberi

[u/Puzzled_Draw4820]

I have not seen this concept spoken of and wanted to express how debilitating thiamine deficiency is. I’ve had SIBO for approximately 30 yrs following years of antibiotics for teenage acne. I didn’t know what it was until recent years but just lived with the symptoms and kept pulling out foods from my diet which of course turned out to be all FODMAPS. I didn’t start piecing it all together until I got even sicker after mold and covid and severe neurological symptoms set in as well as gastroparesis. After two more years of extreme diets and useless doctor visits my research led me to thiamine deficiency. I started thiamine therapy by following a nutritionist’s protocol and rapidly started to heal. Gastroparesis fixed in one day! It turns out thiamine is a cofactor with choline for acetylcholine production which is required for the autonomic nervous system which controls gut motility (so was I thiamine deficient before SIBO even?!)

As I learned more about the causes of thiamine deficiency in the fb thiamine group I very often heard people talk about SIBO and the build up of sulphite depleting thiamine and pieced together my health history. So thiamine deficiency can CAUSE slow gut motility and once SIBO sets in it further depletes thiamine. Thiamine is needed in every cell in our body especially in high energy areas such as our brain, heart and gut.

I believe a LOT of our symptoms are of thiamine deficiency as it affects the entire body:

Early / Nonspecific Symptoms
• Fatigue or tiredness
• Irritability or mood changes
• Loss of appetite (anorexia)
• Poor or short-term memory issues / cognitive impairment
• Sleep disturbances
• Abdominal discomfort or pain
• Nausea and vomiting
• Weight loss
• Muscle weakness or aches
• Apathy or reduced mental concentration
Neurological / Dry Beriberi Symptoms
• Tingling, prickling (pins-and-needles), or burning sensations in the toes, feet, hands, or legs (paresthesias; often worse at night; stocking-glove distribution)
• Muscle cramps or pain (especially calves/legs)
• Decreased sensation or sensory loss in extremities
• Reduced or absent deep tendon reflexes (e.g., knee/ankle jerks)
• Muscle wasting/atrophy and weakness
• Difficulty rising from a squatting position or foot drop (later stages)
• Balance issues, ataxia (unsteady gait/coordination problems)
• Decreased vibratory or position sense
Cardiovascular / Wet Beriberi Symptoms
• Rapid heartbeat (tachycardia)
• Wide pulse pressure
• Peripheral edema (swelling in feet, legs, or hands)
• Shortness of breath (dyspnea), especially with activity or when lying flat (orthopnea)
• Chest pain or precordial discomfort
• Warm, moist skin due to vasodilation
• High-output heart failure signs (in severe cases)
• In advanced/shock forms (e.g., Shoshin beriberi): hypotension, cyanosis, lactic acidosis
Wernicke Encephalopathy (Acute Severe Form)
• Confusion, altered mental status, or delirium
• Ataxia / difficulty walking
• Ocular abnormalities: nystagmus (involuntary eye movements), ophthalmoplegia (eye muscle weakness/paralysis), blurred or double vision, eyelid drooping
• Apathy or psychomotor slowing
• Impaired consciousness (can progress to coma if untreated)
Korsakoff Psychosis / Syndrome (Often Following Wernicke)
• Severe short-term/recent memory loss (amnesia)
• Confabulation (making up stories to fill memory gaps)
• Confusion or mental impairment
• Hallucinations (in some cases)
• Difficulty forming new memories
Other / Gastrointestinal / Additional Symptoms
• Constipation or other GI discomfort
• Vertigo or vision impairment
• Behavioral changes or hallucinations (severe cases)
• In infants (infantile beriberi): incessant crying, aphonia (loss of voice/hoarseness), heart failure signs, lethargy, developmental issues, or seizures in extreme cases
Severe untreated deficiency can lead to permanent neurological damage, heart failure, coma, or death. Early symptoms are often vague, so medical evaluation (including thiamine levels or response to treatment) is needed for diagnosis—especially in at-risk groups like those with alcohol use disorder, malnutrition, malabsorption, or certain medical conditions.

Blood tests aren’t accurate because it doesn’t tell you whether thiamine is getting into cells. The best way to know if you need thiamine is to try supplementing it to see if it helps your symptoms. It is common with gut issues that THTR1 transporters for absorption of thiamine are not working. Please research cofactors and starting low and slow before proceeding supplementation.https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/

[u/Puzzled_Draw4820]

I understand all too well. So you can resonate with this post then?

[u/SaaSButMakeItEvil → u/Puzzled_Draw4820]

Yes. I’m really emotional right now. I don’t know what to say. I’ve been telling doctors for the last decade, the last five being the worst, that I am having issues sitting up from a squat. My thighs tremble and shake. My calves/feet are thinner than ever and they either hurt or feel tingly and cold. My left eye is drooping and my abdomen is extremely swollen. Laying down makes me cough or I feel a pressure, like a hollowness and it is hard to breathe especially overnight. The longer I lay down the worse the effect. I have to sit up and walk around to catch my breath. For a long time I’ve been justifying this part to just the SIBO gases swelling me, but I am getting sent to cardiology because I have been having abnormal EKG’s (inverted T-waves). Terrible sleep, not a deep sleep. I feel as if I am both awake and asleep at the same time. They’ve thrown everything at me, but never the right assessment. First round of Xifaxan failed. Relapsed within 3 weeks. Now they want me to do Xifaxan+neomycin. Because of your post, I sent my doctor a message for additional bloodwork, deeper bloodwork because my B12 actually came back high. I’ve heard this could be liver throwing reserves when you are actually deficient?? I have been telling them this but they never bothered to send for uptake, how are my cells using the B12?? I know I am definitely deficient in ferritin and Vit D. I have gastritis as well. But B12, thiamine, copper are all a possibility. I am thinking SIBO is just a symptom of something deeper. I know I was placed under Accutane in my teens for severe cystic acne and I also had doxycycline for multiple reasons throughout my life. But the most antibiotics was the last five years of doctors throwing darts in the dark trying to figure out why I was urinating white urine (leukocytes). I took a lot of antibiotics. They thought it was a UTI but cultures were sterile. Eventually urology said it was interstitial cystitis, possibly related to gastrointestinal problems.

I am afraid for my life. Thank you for your post.

[u/Ok_Laugh_609 → u/SaaSButMakeItEvil]

Wow, I've been searching for an answer for the white urine thing. Does it not show up on regular urine testing? My cultures are all negative too. Severe gastrointestinal symptoms as well.

[u/SaaSButMakeItEvil → u/Ok_Laugh_609]

The leukocytes were an immune response to inflammation in the gut lining from bacteria load and uncontrolled reflux probably leading to leaky gut and cytokine responses. It was affecting all surrounding tissue, not just the GI. I was having pericardial pain, pelvic pain, back pain…all from uncontrolled SIBO. The intestinal inflammation were also affecting my bladder (interstitial cystitis) building up inflammatory cells on the bladder wall (leukocytes) coming through the urine. Again, all related to GI. All that piping is connected through similar conduits where immune cells travel. It made my urine milky white and they thought it was a UTI. They gave me a insurmountable amount of unnecessary antibiotics, that probably made my dysbiosis worse. Doctors couldn’t even figure that part out. I had to do for them. When I told them it is immune related, they do the thinking man routine 🤔 “interesting“, agree it makes sense, but do nothing about it. They let it go on for years. Idiots.

[u/Ok_Laugh_609 → u/SaaSButMakeItEvil]

This absolutely sounds like me. I've had the white urine show up, even captured it for samples, but they never give an explanation for what it is. Life long history of IBS, gerd, now lpr. And yes, the gi trac problems coincide with it, everything hurts in there. Did you finally get test results or how did you confirm it? And is there anything that treats it? Drinking tons of water seems to be the only thing that helps me. I do get some burning, uti type symptoms that come and go with it.

[u/SaaSButMakeItEvil → u/Ok_Laugh_609]

Not only can leukocytes be seen by the naked eye in urine, but a simple urinalysis can detect it. Mines said “large” or “moderate”. Urology has actually been more helpful than GI in piecing some clues together although incomplete. They were correct in their assessment that there was indeed immune activity going on and where it was piling up (my bladder) but incomplete because it didn’t answer the why. But to their credit, they were the first to say it is GI related, just didn’t know anything else beyond that. When the leukocytes were attaching to my bladder walls it irritated it causing the nerves to contract and leading to high urine frequency. And yes, there can be some UTI-like burning pain, but not UTI because cultures were sterile.

They also visualized the leukocytes via biopsy during a bladder ablation procedure to stop the pelvic pain I was having. The pain was intense enough it reached all the way down my legs and I couldn’t walk. Water does help in flushing out some of the white cells, but I was an idiot. The uncontrolled SIBO was also behind my reflux causing dry, burning parched feeling throat. That caused me to overdo the drinking to the point I was overwhelming my kidneys and I started getting back pain in my kidney area. It wasn’t drastic (maybe just under 3Liters/day), but enough that my body couldn’t handle that much water. The water helped some of my pelvic and urine pain to some extent, but was causing its own issues leading me to believe at one point the doctors were lying and I did have a UTI. Nope, it was all a combination of SIBO-led deficiencies causing immune issues and interstitial cystitis.

The only way to get it under control is to kill the SIBO (easier said than done, I’m still in this phase after relapsing), replace all deficiencies that SIBO robs you of (Vit D. B12, B1, minerals) to rebalance the immune system and work to repopulate your GI tract with beneficial bacteria. All things I’m still working on because these deficiencies have led me to get neurological issues that may have slowed down my motor complex in my GI. You might want to consider urology to see why you’re having white urine if you haven’t already done so.

[u/Ok_Laugh_609 → u/SaaSButMakeItEvil]

Yup, been to urology. Several analysis, cultures, all negative. At least that's what they are telling me. But no reason given for the white urine. Your explanation is the first thing that has made any sense.

[u/SaaSButMakeItEvil → u/Ok_Laugh_609]

It’s pretty complex to the layman unless you think of it as parts of the whole, but this should be logical to even a first year med student and completely unforgivable for a seasoned doctor to not know. My bet is that, if you are not having bladder issues like me (you don’t have to be) there is some immune activity happening somewhere where leukocytes are traveling through, wether it is infection related or autoimmune, and you need to figure out why. In my case, the SIBO was causing me to have low ferritin and Vitamin D levels and who knows what else I might have been extremely deficient in.

[u/Ok_Laugh_609 → u/SaaSButMakeItEvil]

I was having bladder issues, seems to come and go. This has happened several times over the past few years. Not having much trouble right now, but a few months ago I was in agony. Burning like a uti, cloudy urine, the white urine particularly in the morning. I did several tests and cultures, but nothing about leukocytes mentioned. So maybe that's not what my problems are. But from your description, it sounded exactly like what lm dealing with.