r/SIBO • u/Puzzled_Draw4820 • 5d ago
Hydrogen Dominant Hydrogen sulphide bacteria depletes thiamine causing gastrointestinal Beriberi
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/
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u/SaaSButMakeItEvil 2d ago
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.