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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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@ggr hi, i would like to know that did your daughter have allergic reactions to things she ate, like i eat veggies and my face becomes flushed after a while and i sneeze a lot during the months of july august and September, i can only eat meat for now rest anything else i eat like veggies of any kind i get too much gas and bloating and constant constipation which doesn't even fully resolve with laxatives, my heart rate has been also shooting up during normal tasks everything started together high heart rate, constipation, bloating,burping, allergies and congested nose, please let me know did your daughter have any of these symptoms, thank you
Gut Health is important! You got this!
@alex936 She was 2 months old when we adopted her. During that first 2 months they changed her formula several times. A week after we took her home, she had bloody diarrhea. The pediatrician tried dried beef formula, and something else weird. Finally he put her on pears, rice, and lamb. She ate like a little pig and thrived. At the time we had no idea that this beginning was going to be a lifelong issue. She takes a Xolair injection every 3 weeks to hold down hives. She has had allergies and sinus issues her whole life. That may or may not have to do with mast cell. In junior high school she had a months long case of Epstein Barr virus. Missed almost that whole semester. She is 50 now, and can eat about anything she wants. But she usually eats very little at night. I guess it's like she lets her gut rest. Even after diagnosis, she had a hard time finding a doctor who knew what to do with her. She was diagnosed states away from where she lived. At one time she was on 3 meds for anxiety, etc. I guess they thought she was a hypochondriac and needed to calm down. Two were habit forming, and she took herself off by tapering down. She felt much better when she got off that. She has mast cell activation, POTS, and Ehlers Danlos. Fortunately the ED does not give her problems. The mast cell is what messes with the gut. She was diagnosed about 6 years ago. The gastro doctors knew nothing about mast cell. Some may have learned about it since she was trying to find treatment. Hope this helps. Let me know if there is something else. Gloria
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1 Reaction@alex936 I forgot one thing. When she was a year old the doctor suggested that we give her eggs. She took one bite, gagged, and a red spot popped up on her face. So she has been reactive all her life. She can eat just fine today.
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1 Reaction@ggr I am dealing with the same issues with mast cell symptoms and sibo. I would love to talk to you, or your daughter, if you all are willing to share info on what mast cell meds she is taking that helped her Or the doctor/ allergist that helped her. I am so desperate for help. If you are willing to respond to this message, I would be so grateful.
@alex30 Her main Mast Cell med is Cromolyn Sodium. It is in small clear plastic vials, and she puts it in water 30 minutes before meals and at bedtime. It prepares her gut for food. She takes the maximum dose. It is a prescription and has to be kept at a moderate temp and not be too hot or too cold so that is a consideration if you have it shipped. After a couple of failures when a shipment was on a truck without temp control, she now only picks it up at the pharmacy. It is pretty expensive. Her insurance pays, but I don't know how much. There is also a nasal spray and eye drops that are not prescription. You might want to look into that in the meantime. I mentioned the doctor in Arizona who diagnosed her. Her current doctor is Karen Kaufman in Vienna, VA. She is an allergist who also treats mast cell. My daughter gives herself a Xolair injection every 3 weeks, but I think that is to control hives. I know she takes some over the counter allergy meds, but the game changer was the Cromolyn Sodium. I think aspirin is also involved. She usually eats her main meal at noon and very little if anything at night. She finds that works best for her to let the gut rest. There is a book called "Never Bet Against Occam" by Lawrence B. Afrin, M.D. One of the first people to figure out this disorder. I read the whole thing. He started getting referrals from physicians who could not figure out what was wrong with their patients. He started seeing patterns and is one of the first to figure it out. I would recommend you read it. He goes through a variety of cases and different symptoms. I imagine that it is still on Amazon. Have you been diagnosed with POTS or Ehlers Danlos? Neither of those give her much problem. She's very health conscious and runs 5 miles a day. Fifty years old. But she had symptoms when she was a newborn, long before anyone would have known what it was. It will be a great relief to you if you can get the medication, and if it works like it has for her, the SIBO will not come back. You might check Facebook for a mast cell community. I haven't looked for a long time. There was one that had a list of doctors around the county who had been recommended by people on the forum. Please let me know how it goes. I understand your frustration. As a parent, I had a lot of worry until she finally got answers. Also, another thing. Many doctors don't understand it or want to deal with it. Do not let them start prescribing benzos, etc. It is not in your head.