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Have you successfully treated SIBO?
A common story- decades-long GI problems, consulted MD's, GI specialists, others, to no avail. Reactions from "nothing is wrong" to "no idea." Original symptoms major gas and constipation, but gas abated some years ago while insomnia, sinus congestion (causing hearing and equilibrium/balance problems), fatigue, mental fog, random muscle cramps/soreness ramped up.
Much online research. Bought books by Dr. Mark Pimentel of Cedars-Sinai, also Drs. Michael Ruscio, Alison Siebecker, and Elizabeth Lipski. Looked at many GI-dysfunction websites. Learned about IMO and SIBO. Bought Foodmarble tester, actually wore the first one out after 2 years' 6/day testing, replaced it about a year ago. Also learned that antibiotics, specifically riflaxamin and neomycin, have serious drawbacks- neomycin is a broad-spectrum antibiotic, sterilizes the entire GI tract, kills both good and bad bugs, a problem from which many never recover. Paid out-of-pocket for many lab tests, including GI-MAP twice. Tried many combinations of probiotics and neutraceuticals.
My Foodmarble tester initially found methane as well as hydrogen, so the diagnosis was IMO and SIBO. Read all the blogs by Bella Lindemann, owner of the Functional Gut Clinic in Australia, and managed to cure my IMO based on zero methane readings starting 1 year+ ago, but as Ms Lindemann reveals, if you have IMO you also have SIBO. Current test readings show only hydrogen. She is the most knowledgeable source on this problem, but no longer consults with individual clients, having hired several assistants to do that. In an email exchange with her, she recommended one of her people who is on board with the Foodmarble (since it is not universally accepted), but after several expensive teleconferences I realized that this assistant was not using any specific data or test results from me, she was merely copy/pasting generic suggestions and asking the same from-square-one questions each time, so I abandoned that initiative.
My reading has revealed that there are several causes of SIBO, but a colonoscopy showed no irregularities. By process of elimination, I have concluded that the cause in my case has to be stress. Once I thought about it, I realized that stress has been a lifelong issue- I used to grind my teeth and chew my cuticles until bleeding, but never consciously. The stress likely resulted from and was furthered by 40+ years of running my own business, but even though I'm many years retired (I'm 78), the stress is so ingrained that it persists even today- it cannot be "turned off." Relaxation techniques, including various beverages such as teas and bone broths, have not helped- in fact, these days the stress is probably due to having SIBO- a vicious circle.
I'm on a greatly restricted diet, monitored by my wife, who is a credentialed dietitian. An allergy test a while back revealed nothing helpful. Currently battling insomnia using melatonin and daytime naps as well as maintaining a degree of regularity with meloxicam. Cycling through various suppleements, currently Dysbiocide and FC-Cidal. No help with the sinus congestion, which I understand is due to reaction by my immune system, so my hearing is poor- cannot have a conversation unless people shout at me. Hearing aids actually make it worse.
Of course, treating symptoms is not a cure, and since everyone's gut flora are not the same, one person's relief will not necessarily work for another. But perhaps someone reading this tale of woe has been able to tame their SIBO and that solution may be helpful for me. Thanks for reading.
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Mast cell is not infection but rather cells that should be there but there are too many or they overreact. That overreaction can pave the way for SIBO, as I understand. When my daughter's mast cells were brought under control, the Sibo stopped occurring.
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4 ReactionsHow do they bring mast cells under control? (I know there are more than one treatment, wondering which one worked for your daughter?)
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1 ReactionShe takes cromolyn sodium 30 minutes before meals and at bedtime. It prepares the gut for food. She takes other meds too, but that is the main one for mast cell.
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2 ReactionsDoes she have to have a prescription for that? I see where cromolyn sodium nasal spray is sold online but don't see any pills or tablets of it.
It is a prescription. There are ampules about the size of the ring finger that contain the clear liquid. It is mixed in water to drink about 30 minutes before meals. I think she uses 2 at a time, but I think other people may use only one. There are some facebook pages for mast cell that might give you more info from people who are experiencing it first hand. I am happy to share what I have learned second hand.
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2 ReactionsHi, @geezer7491 - I'd also like to welcome you to Mayo Clinic Connect. You mentioned neomycin, so I thought I'd post the information Mayo Clinic has online about this particular medication:
- Neomycin (oral route) https://www.mayoclinic.org/drugs-supplements/neomycin-oral-route/description/drg-20065027
Also, as you talked about a study of a breath tester by Johns Hopkins, I thought it would be helpful to post the information on the study you mentioned, which was published by the journal Digestive Diseases and Sciences in 2024:
- Validation of a Hand-Held Point-of-Care Device to Measure Breath Hydrogen and Its Utility in Detecting Response to Antibiotic Treatment https://link.springer.com/article/10.1007/s10620-024-08583-7
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3 ReactionsHave you tried the low FODMAP elimination diet? Buy the FODMAP app, it is really helpful. There is no blood or stool test which will tell you what specific food groups are upsetting your digestion. FODMAPS are fermentable sugars found in fruits, vegetables, and grains, basically they are starches. The app is great as it gives portions which are safe to eat. It is worth the time and effort to do the diet, finding the source of your trouble will help you heal where antibiotics are just a bandaid.
Link to FODMAP app:
https://www.monashfodmap.com/ibs-central/i-have-ibs/get-the-app/
Good Explanation of the FODMAP elimination diet:
https://med.virginia.edu/ginutrition/wp-content/uploads/sites/199/2023/12/Low-FODMAP-Diet-and-Instructions-2023.pdf
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2 ReactionsThanks for posting. I've determined that my SIBO is not due to a specific food or nutrient sensitivity. I have had an exhaustive food allergy/ sensitivity panel done, and nothing in my food regimen was flagged. As previously mentioned, it seems to have arisen from a lifetime of stress, which I still have to a degree, as it cannot be "turned off" like a light switch. None of the "new age" relaxation techniques has been effective.
As for diet, for some time now I have been on a restrictive diet, similar to FODMAP, and my wife, a credentialed dietitian, monitors my intake. I suspect I will have to continue trying to treat symptoms- not the best solution, but perhaps the only strategy at this point.
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3 Reactionsgeezer7491,
There is not a proven valid test for food sensitivities. You have to do the hard work with an elimination diet. A food allergy is different from a food sensitivity. As we age our ability to digest things like dairy and beans decreases. Stress can exacerbate digestive issues as adrenaline messes with digestion. Total carbohydrate load per meal is a trigger for me.
Recently I started taking 308Tera a prebiotic developed by gastroenterologist Dr. Will Bulsiewicz. I started out at 1/8 tsp once per day, then 2x/day. I am now up to 1/4 tsp/ 2x/day and will eventually work my way up to the 1 tsp/2x/day that is recommended. I had minuscule bloat with the first 1/8 tsp dose and after that have had no side effects. It is amazing how it has improved my stools. Looking forward to seeing how future doses help my digestion. I know it helps with butyrate production which I need as I am missing my cecum where the majority of butyrate production occurs. Butyrates help tamper down inflammation. If you care to check it out here is the link: https://38tera.com/pages/science
Another thought is for you to look into Dr Norm Robillard's fast tract diet, which emphasizes eating a diet low in fermentable potential (FP). He is a microbiologist who had acid reflux for years and found when he reduced his fermentable carb load it went away. His app gives you portion sizes for various foods. I check the fast tract app against the FODMAP app to determine the fermentable carb load. Sometimes a food which is FODMAP safe is too high in fermentable carbs on the Fast tract diet app.
The Fast Tract diet has helped many people with SIBO and acid reflux. https://www.fasttractdiet.com
If I have a SIBO relapse I lower my fermentable carb load for a few days and it goes away. I never let it get out of control, at the first sign of bloat or acid reflux I curb my fermentable carb load.
Hope this helps a little:)
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2 ReactionsMy thanks to all who posted. To those who suggested food sensitivities, I believe I put that theory to bed some time ago- I ate nothing for 24 hours and saw zero difference in breath hydrogen levels, on that day or subsequently, from any of my 6-a-day breath tests.
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