As I prepare for the beginning of fall classes, I reflect upon how grateful I am to have had the last six weeks to really focus on my health and scour the internet and books for insight into my condition. I have been doing so much research and feel like I have made substantial headway in my healing process.
One of the sources of my research was a six-hour recorded webcast by Dr. Mark Pimentel and his colleagues at Cedar-Sinai Medical Center who hosted the Global IBS Symposium (the cost is about $100, but the money goes to a good cause- IBS research). The key piece of information that I took away from this recording was that there is a third type of gas (in addition to methane and hydrogen) produced by bacteria that they know much less about: hydrogen sulfide.
When you hear about the lactulose breath test for SIBO, the results are either that you have elevated hydrogen, elevated methane, both, or neither. Typically, individuals with hydrogen-producing bacteria experience diarrhea, while those with methane experience constipation. Patients with breath tests showing both gases typically alternate between constipation and diarrhea. However, my test results and symptoms do not match up with this trend. My lactulose breath test showed high levels of hydrogen and ZERO methane and I only experience constipation, not diarrhea. One of my doctors suspected that this could be the result of the breath test not being sensitive enough to pick up low levels of methane that were still causing problems. However, we have now pretty much ruled out this theory out. I took Allimed herbal antibiotic (in combination with Neem Plus herbal antibiotic) which is supposed to help with methane, but experienced no relief at all.
Hydrogen sulfide fits like a perfectly-shaped missing puzzle piece in my SIBO puzzle. Here’s why:
- Hydrogen sulfide gas produces the characteristic “rotten egg” smell of “silent, but deadly” flatulence. I experience increased amounts of this when eating high-sulfur (free thiol) foods such as eggs and broccoli. See a full list here. Additionally, the foods that came up on my IGG/IGA allergy test last year almost all fall under this category (the exceptions are blueberries & cranberries): eggs, green beans, sesame seeds, coffee beans, and kidney beans. I used to think that these were such random allergies, but it appears they are not random at all.
- Hydrogen sulfide gas appears to be linked with CFS (chronic fatigue syndrome) and Fibromyalgia. I have been suspicious about whether my onset of fatigue in May was a result of CFS. Also, although I do not have full-fledged fibromyalgia, I do have severe muscle pain in my scapula which is one of the fibromyalgia trigger points. I also have a lot of muscle tightness in my hips and buttocks. My scapula muscle pain/tension began around the same time that my digestive symptoms got really bad. My grandmother (who has suffered from digestive issues much of her life) believes that she suffers from fibromyalgia.
- According to Dr. Pimentel and his team, nearly all cases of SIBO/IBS are caused by acute gastroenteritis. I ordered my medical records from all of my visits to the emergency room and learned that while I did have acute gastroenteritis in 2008, many of my symptoms actually began well before that incident and therefore it was unlikely the root cause of my gut dysbiosis (however, each subsequent case of acute gastroenteritis can worsen symptoms and cause further dysbiosis).
- I had colic as a baby, which is said to indicate digestive distress. Gut flora is passed from mother to child and digestive issues stem back along my matriarchal heritage as far as I can trace them. Therefore, my microbiome was primed for disaster as soon as I came out of the womb. Add in all the sugar I ate, antibiotics I was prescribed, NSAIDS I used for headaches and migraines, and contraceptive pills that were handed out like candy and my gut is probably chalked full of pathogenic critters. My extreme gut dysbiosis would also explain why I got staphylococcus aureus toxic shock syndrome in 2008 even though I was vigilantly responsible and never broke any of the tampon rules that cause you to get the very rare, life-threatening condition.
- The only medication on my medical charts that it says I am allergic to is “sulfa drugs”.
- My maternal grandmother is extremely sensitive to mercury. While I do not completely understand how hydrogen sulfide gas forms in the body and creates issues, I have learned that it creates a heavy metal toxicity that is believed to be the cause of conditions such as fibromyalgia and CFS. This is as a result of improper methylation processes.
- Excessive hydrogen sulfide in the gut damages the gut wall and leads to leaky gut/ intestinal permeability.
So, what am I going to do about this new discovery?
- Follow a low sulfur (in addition to low FODMAP, AIP) diet for 10 days while taking molybdenum (to help clear sulfur pathways). If this helps my symptoms, it should be a pretty clear indication of my sulfur intolerance. I’m not sure what the protocol will be from there.
**UPDATE: I only lasted 4 days low sulfur, low FODMAP, AIP and I took molybdenum for two of those days (150 mg three times per day with food). A couple of days later, I no longer got super itchy when eating grains and other items that previously made me itch. I have been on a successful bout of food reintroduction for three weeks. Coincidence? I doubt it. I also got a nutrient IV around this same time, but I have gotten those before without my itching improving. One of my doctors suggested that it could be a combination of factors relating to an immune system boost.
- I already had blood work testing done for MTHFR. The results should be out in about a week.
**UPDATE: I tested negative for the C677T mutation in the MTHFR gene. I tested positive for the A1298C mutation, but my doctor said that one really isn’t all that detrimental or important.
- I plan to do 23andme.com gene mutation testing. It appears that a certain gene mutation creates difficulties with the methylation cycle. It would make a lot of sense considering my family history of related issues. My doctor will be interpreting the results for me.
- I will never stop trying to figure out what is going on and improve my situation!
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I have the exact same problem as you, get test for sibo and use both the breath test and urine test and let the doctor know that you feel like you have excessive hydrogen sulphide gas production. For constipation predominant sibo, a study has been shown that xifaxan and neomycin taken together is way more helpful in removing those bad bacteria causing all those excessive gasses.
cathleen baxter says
We have a similar genetic issue! I have the CBS/SUOX mutations that predispose to sulfur issues and MTHFR 1298C. I would love to hear how you are doing now. I’m on a low sulfur/low fodmap diet as well. I see a naturopath in Portland OR who is well versed on the sulfur thing and has been very helpful.
Test for intestinal candida both in small and large intestine and stop gut hurting Abx.
Remarkable! Its actually remarkable article, I
have got much clear idea regarding from this paragraph.
Consider Andrew Cutler’s protocol for mercury. I cannot eat the thiol foods and have completed two rounds on this protocol so far.
Hi Kathyrn, thank you for sharing. I actually did Dr. Cutler’s protocol for several rounds under the care of a practitioner and it may have helped slightly, but it also caused me to develop some signs of nutritional deficiencies. It was VSL#3 probiotic that seemed to allow me to tolerate more high thiol foods. Now I eat all the kale I want with no symptoms 🙂 best of luck on your healing journey!