cait

Yes, soon the tables and the floor will be their job. This was only the first week. They're not terribly skilled at it, unfortunately, but this class does seem to be one that is VERY excited about helping. Perhaps their skill will grow. I'll keep the gloves in mind. Part of our curriculum focuses on environmental responsibility. It's hard for me to use baby wipes and gloves on a regular basis knowing how much extra trash that generates, and it's hard to figure out how to explain it to them. That's just my mental block though. I know if I were talking to someone else in this situation I'd encourage them to do whatever they needed to do to stay healthy. But somehow it's hard for me to do that for myself...

But yes, I get the freaking out over birthdays. Being surrounded by gluten brings up a lot of anxiety now. And we haven't even gotten to birthdays yet. Yikes.

We tried, but ended up making the household gluten-free, with a few rare exceptions. It was just too hard with little ones (3 and 5). The restaurant work could also be an issue, but if I were you I'd start with your household and see how much of a difference that makes.

Good luck.

I know there are other teachers here, as well as others who might have ideas...

Last spring I eliminated gluten in utter desperation and was amazed at the difference it made. I wouldn't say I'm functioning at full speed at all, but I'm so much better than I was. My reactions to CC are not as violent as some people's descriptions, thankfully, but I get really tired, get headaches and brain fog, joint pain, and digestive ick. Oh yeah, and I get cranky/depressed. Basically, I feel like I've been hit by a truck, but I lived in that condition for over 10 years before figuring it out, so I'm kind of used to pushing through it.

The challenge is, I teach 4 and 5 year-olds. We had to eliminate gluten in our house because we have a 3 and a 5 year-old, and the CC from them and just from having it around was getting to me. However, I really can't make my classroom gluten-free. And the kids eat lunch there. And snack. And this year breakfast is available in the classroom as well. Is there any way I can manage this so that I'm not CCing myself constantly? I'm having kids wash their hands and faces after eating (I also brought in baby wipes so they can use those if sending them to the bathroom down the hall is not working). I clean the tables and sweep after lunch. I wash my hands as often as I can, and definitely before I eat anything, but we're at the point in the year where I really can't take breaks, so I still have to eat in the classroom, and am often helping them with stuff while trying to eat. Something got me this week, of course. Is there anything else I can do, or is this a hopeless situation?

Thanks!

Just searched and found this thread from earlier this year. I've been gluten-free since May and had gotten to a point where I was feeling better. Not 100%, but definitely headed in the right direction. Then we went to visit my mom for two weeks. After two weeks of low level glutenings here and there, I came back feeling pretty lousy. I thought I'd feel better after being home, but I haven't. My joint pain is back in action, I'm super tired, my stomach is all confused and cranky, and I'm low on patience and mental energy. I may have made some mistakes in the first few days back (we're still de-glutening the kitchen, but have hopefully finished that this week), but it's been hard to tell if I'm dealing with continued gluten exposure, carryover from the two weeks, or if there's some other intolerance I need to sort out. My period finally started today after days of (omgjuststartalready) leadup. I feel like hell. I kinda remember that last month I felt a little funky before my period and then after the first day was back to normal, but it wasn't nearly this bad. Could all of this be the combination of two weeks of gluten exposure and hormonal crap? If so, is there anything I can do to avoid this in the future? Obviously, avoid gluten exposure. But besides that?

We just got back from two weeks at my mom's. As I feared, despite bringing our own cutting boards, pots & pans, colander, etc., I managed to get low level CC the entire time between my mom not really understanding (despite efforts to explain the need to use our cutting boards, etc), going to restaurants, other people eating gluten, etc. My reactions aren't horrible when it's an occasional incident (though certainly not at all pleasant), but after two weeks, my body is totally worn down. I'm exhausted, my joints hurt, and I'm still reacting to EVERYTHING, even when I'm being careful in our primarily gluten-free house. We're home for 1.5 weeks and then we're going away for another 2 weeks. The whole time we're away we'll be staying with other people. The majority of the time we'll be staying with family in a rented house, and of course I'm the only gluten-free person. Then we come home in time to jump full force into the school year. I had hoped that after a summer of being gluten-free I'd be starting the year in better shape, but now I'm worried I'll be a wreck by then. Is there ANYTHING I can do to limit CC on this next trip? I guess the big thing is that my partner or I need to be involved in making anything that I eat, but on this trip cooking dinner often happens at the same time we're putting our kids to bed, so on nights that aren't our assigned nights things will happen when we're not present and there's no way of knowing that other people have been safe. Add to that the fact that my MIL already spends much time complaining about my partner and I being vegetarian and reminding us of all the ways that we're difficult and horrible (like insisting that our children need to ride in carseats and be adequately sun-protected on the beach), and I'm really worried about how to make this a workable trip. Ugh. Am I just screwed?

  On 7/21/2011 at 2:26 AM, lilu said:

Thanks to everyone for your responses.

Cait - do you maintain 100% gluten-free? How long have you been gluten-free? I think I'm hust worried that w/o a diagnosis he won't take the diet seriously enough... I know, his body, his choices, his responsibility... Just seems it would be harder to hold onto over the years without a supporting diagnosis...

I've only been gluten-free for 2 months, so I'm pretty new to it, but yes, I'm strict about it. The problem I have with the lack of "official" diagnosis is that I question myself a lot. I wonder sometimes if I've made this up or am blaming gluten for something unrelated. Or I have trouble saying, "No, really, I can't eat that if you chop it on that wooden cutting board," because I don't have the confidence that an official diagnosis would give me. I know I need to get over that, and at some point I will, I hope. That said, when I'm careful, I have stretches of days when I feel better than I have in a long time. And then when something goes wrong, or when I'm visiting family members who don't understand and I run into a lot of cross contamination (as I have for the last two weeks while staying with my mom), I feel like crap. The difference in how I feel keeps me motivated to stick to it, and I have to be pretty careful to get to the place where I'm feeling good, so there's not really any room for cheating.

I also tested negative but have positive genes, family history, and symptoms. I question myself a lot because of the negative tests, but I am happier in so many ways without gluten.

  On 7/18/2011 at 9:23 PM, kareng said:

I got red colored tape, spatulas, etc. Even a red toaster & cutting board & colander. Red is for gluten free only! Red is for cutting cheese slices before touching the crackers. Because lots of stuff is gluten-free, my red gets used a lot. I use the red tape on the lids of my butter, PB, jelly, etc. It show up better than a label. I would worry that someone putting gluten bread in the toaster might drop a crumb in the other side. Do the bottoms all meet to contain the crumbs? I get plastic containers with red lids. Also, glass ones seem to clean well.

Stainless should be ok if scrubbed. Cast iron has pores so it can contain gluten. Some people put them in the oven during a cleaning cycle. It takes about 600 degrees to burn gluten. Aything porous or with cracks, crevices or scratches could be full of gluten.

Red is the gluten-free color at our house too! And hot pink duct tape on lids. Wheee. We even managed to find red striped dishtowels at Ikea. We've also started to really limit how much gluten is consumed in our house, especially by the little ones, who get it everywhere. Good luck. This is a tricky thing to figure out. I certainly don't have the answer yet.

I always thought I was hypoglycemic and would have major crashes where I got super shaky and miserable. I tried increasing protein in a bunch of different ways and still often would just bottom out at some point. That has definitely improved since switching to gluten-free. I've only been gluten-free for about 6 weeks, and keep getting CCed, so it's kind of soon to give any definitive answer from my experience, but I really do think that the two are related. If your body isn't processing things properly, of course your blood sugar will be out of whack, right? I never actually measured my blood sugar levels during crashes, but I'm pretty sure that's what was going on.

If he didn't improve much in 8 weeks, you may want to look at whether there are any sneaky sources of gluten that could be keeping him symptomatic. I felt a big difference when I finally weaned off of a med that had trace amounts of gluten in it. I was assured by a doctor that it couldn't be affecting me, but it was. My household is not totally gluten-free, though we're moving in that direction, so I keep having accidental gluten encounters. I can definitely feel a difference when I've been able to be totally clear of gluten for more than a few days at a time.

I hope you're able to find some answers.

  On 6/30/2011 at 10:09 PM, Marie1976 said:

Thanks for the tips, everyone. I'm going to take a closer look at what I'm eating/preparing. My kids are 2 and 4, hopefully they will not freak out if I switch out their precious Cheerios.

I just thought of another possible culprit: Some of the labels on food I've been buying (for example, rice crackers) will say "no gluten ingredients" but that it's "made on equipment shared with wheat." Is that a huge no-no? Enough to make me sick?

Yes, shared equipment makes me sick. As do my gluten-covered children, sadly. We've been gradually switching things over, and they're actually curious and excited about some of Mama's special food. They're 2.5 and 5. We haven't decided if we're making the house completely gluten-free, but it's been clear that at least cutting down significantly is essential. My kids hate change but love chex. And they're getting used to the new ways of doing things. They now automatically present themselves for cleaning after eating something gluteny, and know that they're not allowed to touch me until they're clean. Good luck.

I went gluten-free after years of chronic pain and fatigue just to see if it would help, since nothing else has. My dad has celiac, so it was always in the back of my mind, though my tests were negative. It helped. Remarkably. It seems that I'm becoming more and more sensitive to trace amounts of gluten, which I know is normal. But discovering this means that I've been feeling crappy a lot. On Saturday I ate a salad with peppers that were chopped on an old cutting board that certainly had been used for bread more than once in its life (I wasn't at home and decided to risk it). I've felt lousy every since.

And yet, I can't shake this annoying self-doubt since I never had a positive test. Part of me is still not convinced that I really, truly am gluten intolerant/celiac. Like I'm making it up or something. Or that all the improvements and lapses have been coincidence, and there's something else responsible for it all. And, I think, at times that makes it harder to be firm about what I can or can't have without feeling like I'm being a terrible hypochondriac or imposing horribly on someone. Or I feel like people think I'm just a crazy health nut trying out the latest fad.

Is this just another one of those things that takes time? Will I eventually believe this and trust myself? Or am I just hopeless and crazy? Also, is there anything I can do when I run into yet another thing that makes me feel like crap? Taking a long time to feel better this time.

Also a teacher. I totally get how much it sucks. I have a meeting all this week. They're providing breakfast and lunch, which I normally would have loved, mostly because of not having to pack a lunch. Not so much anymore. They used to get some gluten-free stuff because there were two other gluten-free people on staff, but they left at the end of this year. Doubt they'll order special stuff if it's just for me, and they don't know about my diagnosis yet anyway. And even if they did order something different for me, I might not be able to eat it, since I'm becoming annoyingly sensitive to CC. It's easier to deal with since it's not actually going to a restaurant, but I still get it. Food is such a treat for teachers, whether it's something tasty that someone left in the teacher's lounge or a trip to a restaurant just because there's time for once. And then the gifts from kids...

I'm sorry it ruined your book club. I hope there's a way to make it work in the future.

Awesome! When I finish progress reports and other insanity, I'm looking forward to checking out those resources. Now if I can just stop glutening myself. It's taking shockingly little to make me feel like crap now.

  On 6/6/2011 at 1:51 AM, sb2178 said:

yeah, but I had a college friend who ended up with seizures in the ER from dropping one, so patience may be painful but probably worth it. Was switching to gluten-free option a no-go?

I may end up doing that, but she wanted me to get some of the pristiq out of my system first.

Thanks for the various bits of veg advice. Hopefully all of this will get easier once we finish the school year. My partner and I are both teachers so are ridiculously busy and exhausted right now. Once we have a moment to breathe I think many things will seem much more manageable. Two weeks... (that is if we ignore the week of work I have after the kids are done)

Thank you! That list was very helpful. I definitely need to make a more conscious effort to include enough protein. I felt much better for doing so yesterday and today.

I also wonder if I felt better today because I didn't take pristiq yesterday (skipping 2 doses a week for a few weeks to begin the weaning process). I felt awful and dizzy this morning from not having it in my system. Then once my levels from today's dose evened out I felt better than I've felt in a while. Now I'm crashing again. So hard to tell what's a fluke and what's gluten related. I wish I could just stop taking the stuff.

  On 6/4/2011 at 9:11 PM, Takala said:

You're discovering that if you keep consuming gluten in trace amounts, it makes you just as sick as if you are consuming it in gross amounts.

Earlier discussion on this Pristiq stuff:

Yeah, I found that thread and also another one where someone gave a pretty convincing argument for it not containing enough to be an issue. I guess it's pretty individual. Either way I'm starting to wean off of it. I have pretty bad withdrawal when I go off stuff like this, so my shrink wants to do it super slowly. I may switch meds for a short time to get the gluten gone faster and then see about weaning off entirely once I've been gluten-free a little longer. Either way it's staying around for longer than I'd like.

My concern with staying veg is really about getting enough protein. But i'm already changing so many things about food in our household that bringing meat back in seems like a lot to ask. As does making the whole house gluten-free. I think it's even harder to imagine imposing these kinds of changes since the celiac tests came back negative. I'm still stuck in the "I must be making all of this up" phase, which tends to last a long time for me...

I'm new to this and still figuring a lot out. Not officially diagnosed celiac (negative blood test - full battery - and negative biopsy) but my dad has it, I have one of the genes for it, and I feel better off gluten and react badly to it now that I'm off. My questions:

1) We are currently a vegetarian household. I can change that if I have to, but I'd like to see if I can do gluten-free in a healthy way while still remaining vegetarian. Any gluten-free veggies out there have any suggestions?

2) The rest of my family still eats gluten, including two young children (5 and 2.5). How do we manage this so that I'm not being constantly cross contaminated? I have my own toaster and cooking implements on my own designated section of kitchen counter, and we're working on refining this, but are there other things we should be doing? My partner refers to our son (the two year old) as "Edward Glutenhands" because of his intense love of bagels and other wheat products and his amazing ability to coat himself with whatever he eats. I had a reaction to a gluten free pizza last week, and we're not sure if it was cross contamination from the restaurant or from sitting next to him as he ate his regular pizza.

3) After an initial drop in joint pain and headaches that seemed only to return when I clearly encountered gluten, I've had a string of more painful days this week. I'm a teacher and it's the end of the school year, so things are insane. It could just be that my body is exhausted and freaking out. I could be getting exposed to something low-level that I can't identify. I'm also on an antidepressant that has trace amounts of gluten. I'm working on getting off of it, though my shrink thought it shouldn't be an issue. According to things I've found here, it's a very small amount so shouldn't be a problem (the med is Pristiq, if anyone has experience with it). I've only been off gluten for a few weeks, so it's hard for me to tell what's going on some of the time. Any thoughts or suggestions?

Thanks!

  On 5/29/2011 at 10:54 PM, Darn210 said:

I work in a preschool as well (2 and 3 year olds) . . . can't tell you how many times a day I say "don't put that in your mouth".

So, I will only tell you this once . . . Don't put the playdoh in your mouth!!

I still have to say this to 4s and 5s (and at this time of year, even some 6s moving toward first grade) on a surprisingly regular basis. Less frequent, and more directed at specific kids, but still...

I will do my best not to eat the playdough. And I'll just use the regular stuff unless I seem to have issues in it. I figured it was a bigger issue for kids than for me, but it's nice to have the reassurance. Still figuring a lot of this stuff out. I keep finding new ways to make myself feel lousy, so I'm trying to be proactive without being paranoid.

I'm just figuring out that I have gluten intolerance or celiac (tests negative, but have family history of celiac and have one of the genes). As a teacher of 4s and 5s, how much do I need to worry about playdough? Obviously I need to avoid MAKING the gluten kind so that I'm not inhaling the flour. But is it OK for me to have it in the classroom and work with it to demonstrate different activities or do I need to make it all gluten free? I kind of feel like there are a million ways I can encounter cross contamination since they eat in the classroom as well, so cleaning the tables regularly and washing my hands is about the best I can do. Do I need to be more concerned?

Yeah, I'm hoping I won't need it anymore, but am not sure if I'm ready for that yet. Probably need a little longer gluten-free. But there is definitely hope. My emotional state was very different when I had my accidental gluten this week. I don't know if I fully realized how much that had already changed until it was gone.

I'm quite familiar with the WD symptoms of the meds. I get pretty loopy if I miss a single day. There's no way I'd just drop it. Unfortunately, it's a newer drug, so I don't know that a generic is available. It's related to effexor though, so I can just go back to that, if nothing else. I just get more side effects that way.

I'm still fighting the part of my brain that says I must be making all of this up, so i'm caught between wanting to take it seriously and feeling like I must be making too big a deal out of it.

So then I should probably get rid of everything, right? I discovered when I started looking at cutting gluten out of my diet that my antidepressant is not gluten-free. I don't really want to change it because it works well and doesn't have a lot of side effects. But if I need to get rid of it, then that's what I need to do. Ugh. The food part has been OK, and worth it because I feel so much better. But changing meds sucks. Would be nice if being gluten-free made me better enough to just be off the stuff, but I'm not sure I'm quite there. And I'm afraid of messing up this odd new phenomenon of not feeling awful all the time.

My doctor finally called back today. Biopsy and bloodwork are negative for celiac. However, I do have one of the genes for it, and my dad has celiac. I have been gluten-free since the biopsy, and while waiting for the results had an accidental glutening resulting in days of fuzzy head, headache, joint pain, fatigue, and general ick. Obviously I need to stay gluten-free. But do I act as if I have gotten a celiac diagnosis and avoid every trace since I'll never be able to tell if i have developed celiac? Or do I have some flexibility to just figure out what works for my body since I don't have the big bad diagnosis? I'm inclined to say I need to avoid every speck, but don't want to be making too big a deal out of things if I don't need to. Opinions?

Ah. I was looking at a list that incorrectly listed cellulose as questionable. Yay. Glad I don't have to worry about that.

If it was pre-shredded cheese, there's usually stuff added to keep it from getting clumpy. Depending on what it is, that's a potential source, right? I'm new to this, but I know that's something we need to watch when cooking for our friend with a corn allergy.

  On 5/15/2011 at 10:34 PM, ravenwoodglass said:

No matter what the results are of the biopsy and or blood tests do give the diet a good strict go for at least a month or two.

Oh, I will. I'm not giving up. I'm just good at doubting myself. I spent more of the last 10 years than I want to think about going through every treatment under the sun for Lyme Disease. I spent most of it assuming I'd feel like this for the rest of my life (and the more recent years, feeling worse and worse and having less and less hope). Having another possible answer/solution is an amazing possibility, but one that's hard to trust. So it's easy to think that I must have just imagined the improvement in my desperation to have a magic fix. Thanks for the encouragement.