Chaff

that could be orthostatic hypotension...?POTS  are you dehydrated, too little salt, or protein?

It's totally orthostatic hypotension. I only get it after my evening glass of wine, but that has never happened before.  I checked and alcohol should only be cause if I'm overdoing it, but if anything I'm drinking less than a whole glass.  Nonetheless, could be causing dehydration.

I have iron overload and eat way too much protein (not by choice), so dehydration from the alcohol seems likeliest. I'll check with the doctors at Mayo next month just to make sure it isn't something more serious...!

I think we sometimes forget that these boards do not represent the majority of Celiacs.  Most of them are not on forums and boards.

So I think to state as a fact that "It's a common thing for us within 2 years of going gluten-free" is a bit misleading.

If you have read a good article about that, then we would love a link to it.

OK, started a new thread on that here: http://www.celiac.co...literature-say/

Well, I'm not a doctor. And most folks go off gluten and do just fine.  But if you want robust studies on food intolerances connected to leaky gut, I would also love very much to see them.  I'm desperate for serious medical research into the subject.  Until then, we have outlier anecdotal evidence. It's not ideal.

The fact is that fructose malabsorption issues are still not well understood, and their  connection to the increased intestinal permeability brought on by damage due to gluten in undiagnosed celiacs has never been a direct subject of scientific research.  I do wish they'd get in the ball with it, honestly.  Until then we celiacs with odd problems like this are left to look to each other for hunches and advice yo go to our doctors with.

I'm taking my hunches to the Mayo Clinic next month for testing, and have sent away for genetic testing as well to look for other possible causes, since what I have is unusually severe (though two others here have told me they had the same going gluten-free).  But I wouldn't have known where to start without folks here passing along their ideas and experiences.

All of which is to say, yes, I totally agree with you.

Just do a search on the boards here. A lot of people say fructose gave them problems initially. But not most people for sure.

Hm...I get very dizzy upon standing at least once a day, but I have absurdly high iron (serum ferritin in the 250s--I'm waiting for a phlebotomy).  I'll look into this further, but I'd love to know if its a celiac thing.