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Have you successfully treated SIBO?

Digestive Health | Last Active: Mar 11 7:18pm | Replies (56)

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@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.

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Replies to "@ggr I am dealing with the same issues with mast cell symptoms and sibo. I would..."

@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.