Trying To Figure This Whole Thing Out

[ThisIsMyUserName]

I'm just finishing my third gluten-free week. During the weeks, it goes really well, and I'm feeling really good. Because I'm a creature of habit and lazy, I basically eat a small number of things during the week (oatmeal, chicken, yogurt, etc.), so I swapped out Quaker for gluten-free oatmeal, threw out some mustards and bought gluten-free ones, stopped eating costco nuts (made in a facility with wheat), confirmed other things as good. I also added some gluten-free treats to feel less deprived (largely M&M's and slurpees, maybe one a day). I generally, during the week, eat in very controlled environments. So during the week, all good; Definitely not having the horrific vomiting and sick-feeling I had the last month or two, and I think I'm having fewer migraines and less fatigue, so those are less clear-cut.

 

On the weekends, I'm having trouble. I used to hold by a "Eat super-clean all week and whatever you want, in moderation, on the weekends; Obviously that won't hold, so I haven't gone to restaurants or eaten anything gluten-y (breads, cakes, cookies). But I have eaten complicated things my wife or friends cooked, or gone to Rita's for ices (gluten-free according to all online sources), or eaten at tables with lots of people eating lots of things, etc. I have had vomiting each of the last three weekends. The first I know for certain I was glutened, the last two I could go back and find things that might well have been glutened (e.g. the rice was cooked in a pot that was used for pasta; I ate at the same table where my kids were eating bagels, and maybe crumbs got in, etc.).

 

I am diagnosed as having non-celiac gluten intolerance, so I'm figuring there are three possibilities: A) I'm extremely gluten-sensitive and need to be uber-careful Early on I need to be extremely careful and maybe later I won't react as badly, C) I'm not actually gluten intolerant, and there's something else I'm encountering on the weekends that the problem. My GI doc was pretty convinced it's gluten, and all my reading suggests that my experience is pretty common, so I assume A or B, but thoughts greatly appreciated.

[notme]

have you read the newbie thread?  

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

i think you should try using a food journal to see exactly what you're eating.  i have a delayed reaction to gluten (24-48 hours) so the food journal helped me to pinpoint what i'd been eating (or where or out of what, etc) when i couldn't remember everything i'd eaten.  

 

or, it could be cookware (colander, wooden spoons, non-stick pans, etc) ?

 

hope you feel better

[ThisIsMyUserName]

Thanks! I did read this (and, gloriously, thousands of pages and books and websites because when you feel as crappy as I was (and I know every one of you understands) you're really, really motivated. I've been increasingly careful, but I think it's coming down to either I'm one of those people who needs to be exceedingly careful, or I'm off on the wrong track. Probably the former, given how sure my doctor is and how alike all our stories sound.

[kareng]

I don't think you can call your self "Super Sensitive" just yet.  If you have Celiac, than 3 weeks gluten-free isn't going to cure anything.  And, considering there is a learning curve - you probably aren't really gluten-free yet.  Especially as you are eating things other people, who don't understand Celiac/gluten-free, have made.  Maybe missing something - like using the same PB jar the gluten eaters are or not realizing a food has gluten in it (think things like soy sauce or licorice that people wouldn't expect).

[notme]

lolz - one of the dumb things i had to learn is to stop licking my fingers!  in the beginning, i would fix the kids something to eat ('regular' chinese leftovers comes to mind, where the 'soy' sauce is made of wheat)  take it out of the microwave after heating it, stick my finger in it to test the temperature, and stick my finger in my mouth.  herp derp.

 

or - hand sanitizer !  doesn't wash off gluten, it just makes it really germ free lolz - soap and water are your friend  

 

karen is right - three weeks is not very long in the grand scheme of things.  you probably have residual inflammation (or damage) that is irritated by many things.  it's hard to be patient, i know!!

[ThisIsMyUserName]

Thanks for the thoughts. It's pretty clear to me this is a long haul effort, but given that it seems to take days to recover and I get glutened remarkably often, it's a big disheartening. Nevertheless, I shall stick to it.