luludi: (endo: hot water bottle)
[personal profile] luludi posting in [community profile] celiacs
I've tried to be really careful, and since I started excluding gluten I've felt so much better, but today I had some Crystal Light (red tea version) and some Orbit Mist gum (watermelon) and since then I've had cramping/problems. The Crystal Light actually says Gluten Free on the package, and Wrigley's claims their Orbit gum is, but something made me have symptoms again and these are the only two things I've changed in the past 48 hours.

I know companies sometimes say their products are gluten free when they actually aren't (not on purpose, just because they aren't very educated on all the places gluten can hide). Grr... just venting, I guess :(

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Date: 2009-06-16 03:45 am (UTC)
hooloovoo: sunset, with clouds and hooloovoo written in blue at the bottom. (Default)
From: [personal profile] hooloovoo
That's so frustrating!

You were only recently diagnosed, though, right? It takes a couple months to get all the gluten out of your system, I read somewhere.

I went gluten free 2.5 years ago, BTW

Date: 2009-06-18 07:01 am (UTC)
hooloovoo: sunset, with clouds and hooloovoo written in blue at the bottom. (Default)
From: [personal profile] hooloovoo
For me, the most obvious symptom was a rash on my arms. Dermatitus herpetiformis, or whatever. When I stopped eating gluten, it went away within a couple of weeks. But a more mild version cropped up occasionally for maybe a year? I haven't had any rash at all in a long time, at least a year.

Also, after I went gluten free I kept having issues, and it turned out to be that I was reacting to milk also. So I went dairy free, and then last month was really fed up with all of it and decided to try eating dairy again, since it was less likely to permanently damage my intestines. But it was fine. I didn't react at all. I did some research and apparently gluten damage can make digesting milk difficult, and that takes a long to heal.

So you might try cutting out milk, to see if that helps. But don't get discouraged if you're still feeling icky. The helpful thing about a rash is it's a lot easier to quantify than gastrointestinal stuff. For me, at least. I didn't really realize how much of a difference being gluten free made until I got glutened. I think the first time it happened I got really grumpy, slept for 20 hours, and felt like shit for a week. Then I realized that most of the time I felt a lot better than that.

Plus, gluten screws with your brain chemistry. Well. I don't know how much of an impact it has on the average celiac. But my family (me, my uncle, 2 aunts and 3 cousins have it) tends to get depression as the first symptom of being glutened. So if you're still having gastrointestinal symptoms, it would stand to reason you might be having mood symptoms too. Not that knowing you feel bad mentally because of gluten really helps, but... When my stomach is upset, I take my emotions with a grain of salt, if that makes sense.

Anyway, being gluten free gets easier. Well. It always sucks, but eventually it becomes enough of a habit that you stop thinking about how much it sucks.

In some ways, it's better if you get out of the habit of eating gluten type stuff. Bread and cake and pasta and stuff. When I don't eat fake gluten foods, I crave them less. Eventually. But that's really hard. And I can never manage it for very long. So. Go get some tasty stuff. (I looked at your profile.) Apparently, you live in Portland. I googled, and they have tasty stuff there. is a gluten free bakery that looks good, though they're apparently closed right now. Oh! Last time I was in Portland I got gluten free frozen pizza from.... That one grocery store they don't have up here. New Season's Market, maybe? Don't remember. But a few grocery stores have them. It's hard to feel good physically when mentally you're like "OMG, if I don't have a donut I'm going to die." Rice cakes replace cookies well, in that they come in sweet flavors and are crunchy. For some reason, moderately sweet things are hard to find. ...I should go get some rice cakes.

Anyway, that's way more info than you asked for. Hope some of it helps. :)


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