SIBO and MAYO

@retiredbabe I would recommend that you do some research on Mast Cell Activation before you go to your doctor. It may be that he/she has never heard of it. It has been a recognized diagnosis for only 12 or 15 years. As far as I know, and it may be different now, there is not a test for mast cell. That's why I suggest you research on the Mayo Website, Cleveland Clinic, or just Google and see what you find. I think it is diagnosed when other things are ruled out. My daughter takes Sodium Cromolyn mixed in water 30 minutes before meals and before bed. It prepares the gut for food. There used to be a Facebook site on mast cell where you would be able to see what other people have experienced and see if you find some situations that match yours. I'm not sure if it is active, but it might still be up. I hope this is helpful. My daughter struggled for a long time before diagnosis. Looking back we think she had it at birth. She is adopted, and came to us at about 7 weeks. She had difficulty adjusting to a formula, and the pediatrician finally took her off formula and fed lambs meat, pears, and calcium supplement. She does not drink milk. I would be interested to know what you find out. Good luck!

@retiredbabe
It sounds like you have been through a lot, but are desperate for some kind of resolution. Sadly, a lot of people find themselves in these shoes, so I am just going to break things down so even if they are not explicitly relevant in your case, it may help someone browsing later on.

I have visited Mayo twice, about 3 years apart. Both times was a ~one week visit. You arrive day 1 and meet with one or two doctors, and based on your medical history, they will assign tests over the next 3-4 days to fill out any gaps in your chart. They may be things like stomach endoscopies + aspirations (the gold standard to diagnose SIBO), or eating food with x-ray dyes and monitoring digestion with x-rays to evaluate you for dumping syndrome. Again, it depends on what the doctors think is relevant for your specific case. Then, at the end, you meet one last time, they explain their thoughts, and then send instructions on how they think that you and your local doctor should proceed.

One hopes that by going to the Mayo clinic or similar top clinics, that they get confirmation that the existing diagnosis is correct, and that they are trying to treat the correct issue.

SIBO is notoriously hard to diagnosis, plus it overlaps with IBS, which itself is a catch-all term for otherwise inexplicable digestion issues. Knowing what condition you are dealing with is half the battle.

SIBO is also notoriously hard to treat. Even the best antibiotics have about 50% chance of working the first time, and in a lot of cases the issues come back, giving a much lower overall success rate. That's why I recommend going to a forum like reddit where people document what exactly they had (and how it was determined), what they tried that did not work, and in some cases, what they tried that did eventually work.

The success cases all seem to have the pattern that they tried various compounds (supplements or Rxs) for a long time, while also manipulating their diets. It obviously takes some faith that some random cocktail will work since the results are not instantaneous, but for people that have suffered for years like it seems that you have, there is no other alternative.

Hope this helps, happy to share more thoughts or expound further if you have specific questions.