Living With SIBO: What Actually Helped Me Manage My Symptoms

I found out I had SIBO in 2015. I had probably had it since I was about five. Dr. Allison Siebecker became my doctor, then my colleague, and most of what I know came out of that.

It Started With Food Poisoning at Seven

We went to India as a family when I was seven or eight and I got food poisoning. I remember being ill, and I remember being at the American embassy afterwards with my mother, delighted that I was eating a box of sugary cereal.

The pattern runs like this. Food poisoning, then post-infectious IBS, then SIBO. Any time motility is impaired, and the migrating motor complex stops doing its sweeping job in the small intestine, an overgrowth becomes possible.

Back in New York, my father asked my mother whether I went to the bathroom regularly. That was the first time I felt shame about my own body, and I was a child.

When You Become Scared of Food

I did not want to go to the doctor, so I did what you do. Fiber. That made it worse. An apple a day, and I ended up on the floor writhing. Then pizza, garlic in sauces, raw vegetables, salads, one thing after another.

The choices got smaller and smaller. Either I was not eating much, or I ate a reasonable variety and paid for it, awake in the night in real pain.

I was genuinely scared of food. I remember asking myself whether that counted as an eating disorder. It did not, in my case, but the fear was real and it narrowed my life. I say that plainly because I do not think enough people admit to it.

The Brain Fog Was the Frightening Part

One day the fog was so heavy I could not speak. The thought was in my head and it would not come out of my mouth. I was in heavy mold exposure at the same time, so it was a combination.

There is a hypervigilance that comes with this. I had it badly, mostly around food. It leads to more fog and more anxiety, and it feeds itself.

Nobody Talks About It

All of this happens behind closed doors. I saw the same nail tech every fortnight for two years and never mentioned it. When we finally talked about health, we discovered we had most of it in common. Two years of being able to help each other, gone, because neither of us said anything.

So talk about it. Remove the shame from it. We all have bodies. And SIBO carries more than the obvious symptoms, restless legs, rosacea, odd B12 and ferritin levels, malnutrition.

My Underlying Causes, and Why Some Stay

I have three that are not quickly resolved. The antibody from food poisoning that impairs the migrating motor complex. Ehlers-Danlos, a collagen disorder, mild in my case, where laxity in soft tissue can shift organs enough to affect motility. And many years of mold exposure in a television studio.

There is old Lyme in there too, which reactivated Epstein-Barr, and I am postmenopausal. A collection.

If you are hoping every test comes back clear, I would gently question that. Unless you are twenty with no exposures and excellent genetics, it is not a realistic goal. We live on a planet with things in it.

What Managing It Actually Looks Like

A prokinetic, so the migrating motor complex has help. Work on reducing the overgrowth, which rebuilds the terrain by itself, and that part gets very little attention. Digestive enzymes.

And expanding the diet, which is the actual goal. More food, not less. I call it spinning the plate, getting variety back for nutrition and for microbiome diversity. Not vetoing everything. Not arriving at Thanksgiving with your own container, unless you want to, in which case do.

It has been a lot of work and a lot of discovery, and it is not as complicated as it looks from the inside. Any of it belongs in a conversation with a practitioner who knows the condition.

Find Someone Willing to Learn

The gastroenterologist who finally helped me looked at the studies I brought in and said they do not teach us this in school. That is the attitude you want. Someone open to being educated, or already staying current.

This mimics other things. Candida, parasites, and you can have all three. You do need to be your own detective to a degree, and you should not have to do it alone.

There is promising work coming out of the Cedars-Sinai MAST program with Dr. Pimentel and Dr. Rezai. I think this is going to be cured in the next couple of years, frankly. In the meantime, let us get you eating more, and get you feeling better. There are answers. There is hope. I am glad we found each other.