Specifically bad reaction to malt/maltose?

[tooth-whisperer]

Hi all,

Still working on my diagnosis (first GI appt today, excited!), but have a question for you all.  I know a lot of celiac a suffer panic attack like symptoms from gluten exposure - dizzy, lightheaded, jittery, anxious, feeling like about to pass out.  Obviously I have to be eating gluten right now, most of the time I don't have that kind of reaction, but I do get it from time to time, and I'm starting to wonder if it could be caused by maltose and/or malt flavoring?  I can recall at least 3 specific instances recently where I've gotten the feeling after having alcoholic drinks made with malt (porter beer twice, brewer's malt, once lastnight from a hard root beer, a malt drink I believe).  Also, my coworker made me some gluten-free goodies this week, one of them was an Oreo ball that had a cream cheese-chocolate filling, and had a bit of Bailey's Irish Cream in it as well, although she said a very small amount.  Wondering if the Bailey's or something else in that treat had malt in it.  Just a theory right now.  Anyone?

[squirmingitch]

I have a theory that there are subsets of celiacs. That there are celiacs who react more strongly to barley than perhaps to wheat. I have almost always had a problem with barley. When I was a teen experimenting with alcohol, I quickly discovered beer was NOT for me! Every time I had beer, it felt like a metal rake had been raking the inside of my intestines & I ended up in the bathroom numerous times and those screaming gut cramps accompanied. Same thing with malted milk balls. When I came home with my halloween bag I would go through it & give all the malted milk balls away to anyone who would have them. Same thing with Carnation Instant Breakfast malt chocolate flavor -- got me every time. I quickly learned to avoid anything with malt or barley. To this day I have never tasted barley soup because I didn't dare. I always wanted to as it sounds so warm & hearty but I stayed away from it.

My theory is that there are also subsets who react more strongly to rye like I do to barley. 

Until there is a big study done on that theory we can't actually prove it.

[Darren]

The fact is everyone has different symptoms, so yes you could react differently to different sources.  Either way you'll need to eliminate all sources of gluten even if you don't have any symptoms from some things.  I never used to have any symptoms from any sources prior to being diagnosed until I became anemic and it was discovered that way. I'm fortunate it was discovered early. So just focus on getting diagnosed and prepare yourself to become 100% gluten-free as it is very tricky at first. Best of luck to you!