at home breath testing - high hydrogen levels

[rose1812]

hi, i was recently diagnosed privately with gastroparesis & probable ehlers danlos but am still struggling to get treatment as I can't afford that privately & getting a my local gastro consultant to help has proved difficult!

I've had high calprotectin levels for just over a year (usually around 400+) but colonscopy & endoscopy showed no evidence of crohns or colitis. the private consultant i saw told me this could possibly indicate bacteria overgrowth in my intestines & as i can't really get anywhere with it, i bought a device that tracks the hydrogen levels in my breath 3x every hour after i drink something (i don't have solid food, i drink supplement drinks)

i know this isn't a way to diagnose myself & of course I'm not trying to - but it's shown the hydrogen levels in my breath to be high pretty consistently - usually between 8-10 each time I take a breath test, sometimes it dips in the morning but still shoots up later on.

I'm just wondering if anybody knows what this means? i can't find a lot about high hydrogen levels, so i don't know if it's indicative of bacterial overgrowth, or if it's slow gastric motility (gastroparesis) or my body not absorbing properly or fast enough. like i said I'm honestly not trying to self diagnose! i just wondered if anyone knew anything about this?

thank you

[Luisa22]

High hydrogen on breath test could be a sign of SIBO, which is bacterial overgrowth in the small intestine. If the breath tests you use are accurate. There can sometimes be errors with all kinds of SIBO breath tests, not just the at-home ones.

There are 2 approaches to curing it. One is antibiotics, and the other is herbal medicine.

Lifestyle and medication things also play a part, such as a history of taking PPI medicines or too many antacids, not doing a good overnight fast which helps the gut to do its cleaning-out, low stomach acid, a weak ileo-caecal sphincter (where the small intestine meets the colon) and other reasons.

Some doctors are a bit at a loss with SIBO, particularly in the UK so I heard, but can you discuss it with the doctor?

[Andann in reply to Luisa22]

That's interesting Luisa about the history of taking ppi meds for a long time. I was on them for at least 10 years supposedly for high stomach acid. I gradually stopped them over a few months, went on low fodmap, low fat diet over a year or so and my stomach is a lot better, after finding most of my triggers. (Gastroscopy showed I have a lot of fundic polyps in my stomach which at this point dont cause any problems but I wonder what will happen in future) I have to be careful with alcohol too ....but shouldn't we all?

[xjrs]

Unfortunately the breath tests aren't accurate. I had high hydrogen but it turned out I didn't have SIBO. My gastro said that true SIBO cases are rare. SIBO treatment can be pretty brutal on your micobiome. I would only try things out under the guidance of a gastro.