SIBO and MAYO

Tagging a few Mayo Clinic Connect members who have mentioned Mayo Clinic and SIBO to see if they can speak to their experience with Mayo Clinic for SIBO @gboi @sailingohana @kendra75 @azj @melrosedecosmo @ggr. Hoping they can advise on going to Mayo Clinic and whether they an offer treatment that has helped.

My daughter went to Mayo Scottsdale. She was diagnosed with mast cell activation, that was the underlying cause of the SIBO. Since she has been on the med, she has not had SIBO. I can't remember how many years it has been. At least 6, maybe 8. A neurologist diagnosed her with POTS and Ehler's Danlos as well. She takes a lot of meds. The mast cell med is Cromolyn Sodium. The doctor was Brent Goodman. It looks like he is no longer at Mayo, but it also looks like he still has an association with them. She lives in VA. Her mast cell doctor is an allergist. If you have recurring SIBO you might want to investigate mast cell activation.

You said you still have SIBO, are the symptoms Nausea and stomach pain?
Thanks.

@carmapple9. I have severe constipation, esophagitis and weight loss. I'm always hungry.

@ggr So is her SIBO gone now?

@carmapple9
I have intestinal pain gas, which can be severe and sometimes migrates into my chest, shoulders and neck. Some nausea, but not often. Also have near constant diarrhea. I follow a diet I found on the Cedars Sinai website which is better for me than anything I’ve tried. I am also gluten and lactose free.

Hi @retiredbabe ,

Sounds like you want an idea of whether Mayo could help you with your ongoing GI symptoms, a reasonable request since a trip to Mayo can cost more than Disneyland and is slightly less fun.

I did visit Mayo and my SIBO has become manageable, but that was largely due to a combination of lifestyle choices and constant effort on my part. I had / have diarrhea-dominant SIBO due to a surgery in my intestines, and you appear to have constipation-dominant SIBO with no obvious cause (besides perhaps being older in age).

The benefits of going to Mayo are as follows: you are going to have your case reviewed by a team of top GI doctors who see many different "hard" GI cases all the time, and they will offer their second opinion as to whether your symptoms are likely due to SIBO or something else. If they think something else is wrong, they can usually schedule you immediately for the corresponding test. If they feel compelled to prove that you have SIBO, they can have you do a breath test + stomach endoscopy with aspirations (especially since you have stopped responding to antibiotics, it appears). From this point of view, it would seem prudent to make sure you do, in fact, have SIBO, rather than spend years barking up the wrong tree, potentially.

As far as treatment goes for stubborn SIBO goes, well, unfortunately they don't necessarily have any magic bullets. Perhaps I missed it, but were you ever on motility agents in addition to the antibiotics? Conventional doctors are less likely to Rx these because they can have bad side-effects, but a gut mobility specialist could help find one that's right for you.

Besides that, if I was suffering from your version of SIBO (and as a reminder, I have a different version of SIBO), I would put on a pot of coffee, go to https://old.reddit.com/r/SIBO/, sort by "best all time", and start reading to find people with my exact symptoms and read how they solved their situations and make myself a list of ideas to try.

@retiredbabe

It is gone. I don't think she has had a recurrence in several years. She keeps the Mast Cell Activation under control.

@gboi I did the reddit thing and not much help. I have had 5 tri tests. It started with methane 71 and after tons of stuff the 5th test indicated my methane dropped to 25 but hydrogen which I never had before jumped to 30. It isn't just my age. I also have been diagnosed with MTHFR which supposedly can lead to SIBO. And my appendix ruptered at age 19. Since then I've had two other abdominal surgeries. Motility is a serious problem both for the constipation which never let up and the esphagus which also gives me heart attack symptoms. I've tried over 15 different motility supplements and 3 prescription ones. U of C says the new jona stool test tells you what your body is lacking and what it should avoid. It cost $500 so I'm hopeful. Can you take a lot of the tests for Mayo at home to reduce the time needed? If the jona test doesn't help I will try them. How long did you have to stay?

How does she keep the mast cell under control? I have a family doctor
appointment soon and will ask if he can test for mast cell but I have MTHFR
and have had three abdominal surgeries. I can't remember ever not having
some kind of digestive ailment, even as a young child.