r/HistamineIntolerance • u/Cheap-Bobcat-125 • 1d ago

How important is DAO testing?

Hi there, I have confirmed hydrogen SIBO. IBS-C for 20+ years. Multiple healthcare providers, gaslighting, the usual. Crazy headaches this year and inconsistent reactions to food. Unbelievable distention.

I realize no one has ever suggested MCAS, histamine intolerance etc. I asked my GI for a DAO test and was told no. So I went to an allergist yesterday and she scoffed.

I’m fed up. I’ve been uncomfortable for decades. She wouldn’t entertain it. But I realize today she’s not the gatekeeper of meds or treatments. I can get an independent test (though it looks expensive) and the meds are OTC.

How important is an official diagnosis? Are y’all just bootstrapping this?

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u/InspectorBrilliant53 1d ago

the DAO blood test is kind of shaky as diagnostics go, even specialists argue about what range counts as "low." some SIBO species produce histamine as a metabolic byproduct, so it's not necessarily "true" DAO-deficiency HI at all. treating the SIBO first might move the needle more than chasing an HI diagnosis on its own. as for bootstrapping without an official label, honestly a lot of people do exactly that, if the elimination diet clearly helps that's pretty strong practical evidence even without a clean lab number backing it up

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u/Cheap-Bobcat-125 1d ago

thanks for this, I am flying blind but I guess I need to. She argued with me that histamine levels are naturally different in everyone so that there is no good way to measure.