cait

I got ibuprofen from a compounding pharmacy because I needed something I could take for headaches when CCd without making things worse. Well worth it. I've always had a kind of iffy relationship with aleve, so have been avoiding it, especially after reading the warnings that it may contain gluten.

I wish I knew. Maybe there's something else I'm reacting to? Maybe I eat too much sugar (chocolate is my only happy thing anymore)? Maybe the large quantity of crumbs/gluten coated children in my classroom (I teach 4 and 5 year olds)? Maybe I should have my thyroid checked? Maybe leftover stuff from having had (misdiagnosed, inadequately treated) Lyme Disease? There are many possibilities, but I have no idea how to begin sorting it all out. I felt better initially. Dramatically so. Then less so. Then I figured out other intolerances and it was better again, and then, again, the backslide.

It's spring break, so I'm going to doctors this week since I have time. Don't have much confidence that anything will come of it, since everything I've figured out so far has just been me figuring it out, not any medical professional finding anything. I'm always one of those people who checks out perfectly fine on bloodwork, etc, and yet always feels much less than fine.

I so totally hear you. I hate food. I hate dealing with it. I like eating it when it's something I enjoy, but the whole process of finding something that won't make me feel crappy, but still provides some amount of nutrition and maybe even tastes decent...UGH. It's 9:30 at night and I need to eat dinner but haven't yet because yet again my whole family was able to eat something while we were out having a lovely evening and there was nothing, nothing, NOTHING I could eat anywhere. I didn't care at the time, but now the prospect of scraping something together for me is just frustrating and overwhelming.

It's made worse by the fact that I still don't feel better. Sure, if I eat the things on my list I feel worse. But I'm still so tired so much of the time, and my body is still just not right. Makes finding the energy to deal with food even more challenging.

Sorry for the threadjack vent. Just trying to say YES, I get it.

In terms of vitamins, vitacost allows you to filter by multiple allergens, which is at least a starting point. Obviously you might still react to them, but I was able to find a few things that said no corn/soy/dairy/gluten that way.

Sorry you're feeling so miserable. I hope you can figure something out. I wish I had more wisdom to offer.

I can't eat them because they generally have other problem ingredients, but we buy vans and trader joe's waffles for my 3 year old son as a quick breakfast option during the week. Obviously, not the most discriminating palate, but they do get consumed. The 5 year old eats them sometimes too and has no complaints. Yes, you'll get better results making your own, but we still haven't managed to replace our waffle maker, so I can't speak to specifics on that one.

I'll have to check into that. Would be awesome if that were the case. Unfortunately, what I took was the generic, which I'm fairly sure did have corn.

Argh. I was afraid that would be the answer. I don't even know if I could get a doctor to write a prescription for that. I fight through most things without taking meds, but there comes a point during my period when it's either curl up in corner and die or take something and remain mildly functional. My class of 4 and 5 year olds might freak out a bit if I chose the curl up and die approach. Tonight that means that I'm dealing with the rebound ick from breaking down and taking alleve earlier today. Stupid body.

Are there any painkillers that are free of both gluten and corn? My corn allergic friend can take advil geltabs, so I bought some of those, only to find that they contain gluten. Grr. I'm not as sensitive to corn as I am to gluten, so I have taken things that I know are gluten-free, but not free of corn when I absolutely can't stand it anymore. However, since both cause pain, it seems stupid to take something for pain that includes either ingredient. Anybody?

My kids accepted the change to annie's gluten-free mac and cheese, and they're pretty picky about some things, so I'd take that as a good sign. Of course, now none of us can have dairy...

When you get to a point where you can handle making something, the King Arthur gluten-free mixes are good. You can make a loaf, then slice and freeze so you can have it on hand. It's not the same as gluten bread, but it's pretty good in my opinion. I also like Namaste bread mix. They're easier than making your own, and they come out reliably well.

Sigh. You all make a good case for it. As soon as we figure out how to do it, I will. I won't like it though. So there!

This seems to be bringing up all of the rage I didn't have about giving up gluten and other foods as I discovered additional issues. I've already had to cut out so many of the things I liked that the idea of not being able to have the few things I do still enjoy whenever I want them makes me furious. And it's already so hard to eat that complicating it further just makes me want to cry. I'll get over it.

I'm working with a nutritionist due to ongoing fatigue and other symptoms after removing all of my obvious triggers. I've been gluten-free since May, and removed corn, soy, and dairy after doing an elimination diet this fall. Haven't trialed oats yet since I suspect it wouldn't go well. Was vegetarian until fall, when it became clear I needed to add in other protein sources, and still haven't added in red meat. Not sure I can go there yet, and not sure how my body would react since I haven't had red meat in about 20 years. In the last consult, my nutritionist suggested doing a rotation diet to keep me from developing issues with other foods. How likely is this? I'm not anxious to make food any more complicated than it already is, but obviously I don't want to add to the list of foods I can't tolerate. I was sort of hoping that over time I could add things in rather than taking more away. Any opinions/experiences?

California Baby is free of a lot of stuff, including gluten. We've used it and like it a lot.

I thought I was fine with Mexican coke since it doesn't have HFCS (I react to corn). Sadly, I'm not, and I don't know exactly what it is that I react to in it.

Yep. I have a couple of degenerating discs that present ongoing issues. Interestingly, when I went gluten-free, my back pain lessened. Totally was not expecting that, since I knew there was a clear cause for the pain. Nevertheless, I could sleep on my stomach again, which I hadn't been able to do even after spinal injections and PT. Now it seems there's a pretty clear connection between the times when it flares up and gluten exposure. I get headaches and GI stuff first, then the back and the other joints jump in on the second day.

I hope you can find an answer quickly. That must be awful. I will say for me, the creeping back of symptoms seemed to be due to corn. I react similarly to corn and gluten, though not as severely to corn. But since doing a careful elimination including corn-based vitamins, I seem to be improving again. So I wonder if there's some sort of cross-reaction going on. I'm sure the last thing you want to do is eliminate another food from her diet, so hopefully you'll get a better answer.

Yeah, they're kind of hit or miss. Their labeling drives me nuts, because I never know what's actually safe. I no longer eat much from TJs.

Is it possible that it's something from the night before? Vitamins or other meds that you take every night? Often I can tell as soon as I wake up, but there are times when I think I feel OK when I first get up, and then WHAM it kicks in after a few minutes. More often for me, though, that's a corn reaction. Is it possible that you're reacting to something else?

Interesting attitude - why on earth would anyone want to feel this way?!

I can't avoid all the bread etc in my kitchen job but there are a few things that have helped enormously. I wipe benches constantly. The place has never been so clean. Fortunately the boss has excused me from handling bread/toast so I made it my job to follow up behind the others and clean up the mess. I wear powder free gloves the whole time and replace them whenever I've come into contact with bread etc. I often go through 3-4 sets in an hour or two.

Would it be practical/possible to wear cotton gloves whilst at work? I wonder if you could make it part of your routine to wipe benches after meals/snack time. Perhaps at their age the kids could "help" Do you have sink/bathrooms for them/you to wash after eating?

I've had to go fairly extreme to deal with my crazy DH so this is just to let you know what worked for me:

After slow slow progress I eventually went back to basics meat/veg/fruit/rice/rice noodles.

Now I can add in ONE ingredient/product to test my reactions. I generally wait for a few days before trying the next. Usual two a week at most. If something works I give it three goes (ie new packaging).

I still haven't found a chocolate that works for me and my DH (I suspect iodine but who knows!) and I ate raisins that gave the whole gastro/DH flare/brainfoggy business for days (what I believe to be my CC reactions).

There are many gluten-free products that haven't tested well for me but there is one brand here is Australia that makes a couple of cereals that I now eat occasionaly. Simple with none of the gums/chemicals/additives/salt etc.

This has all been hard work but it has made a MASSIVE difference for me. I'm glad many/most (?)celiac/gluten intolerants don't need to do this.

Have you been through your bathroom/cleaning/laundry/makeup products?

Thanks for your thoughts.

We do wipe tables and sweep after they eat, but it's never terribly thorough. It's a fine line, management-wise. Time spent cleaning is time I'm not reading, singing, or otherwise working with a squirrely bunch of little guys after lunch. So there's generally a point where I have to stop the cleaning and move on to a new activity before chaos takes over. I have them help, but they're little, so they're even less thorough than I am. At the beginning of the year, I had them go wash up after lunch, and I still try to. However, we don't have bathrooms in our classrooms, and we are solo during lunch, so I can't monitor them when I send them down the hall, and while most are quite responsible, others get into trouble unsupervised. Basically, the things I need to do to protect myself conflict with the reality of managing a classroom of 22 4 and 5-year-olds...

I have gone through body/household products, so I don't think that's the problem. My vitamins, etc, were all gluten-free, but I'm switching to ones that are also corn free, so we'll see if that helps. If not, I may need to do the super elimination diet route. Ugh.

I think part of the problem here is that the tests aren't totally reliable. There are cases where someone tests negative but does have intestinal damage-- just beyond the range of the scope or in spots that weren't biopsied. So you're absolutely right that both need to be studied more. I just don't think we can say with 100% certainty that everyone who tests negative for celiac doesn't have it. Both the blood tests and the biopsies have false negatives sometimes. So it's possible for someone to get caught in the false negative range for both.

I had negative blood tests and a negative biopsy for celiac. However, nobody ever ordered the full panel of blood tests, and the number of biopsies taken was less than some of the recommendations I've seen. More importantly, my dad has blood and biopsy positive celiac, my genetic tests show risk factors. Knowing that, and knowing how I responded to removing gluten and how I respond to traces that sneak in, it's actually safer for me to act as if I DO have celiac despite the negative tests.

I understand your original point and am not trying to jump into the argument here-- I just think there are some shades of gray. Which again points to what you're saying about needing to study both further.

Really not trying to add fuel to the argument here. Just trying to pull together the arguments and show the common ground. Probably failing, so feel free to ignore my post. This convo has probably gone on long enough.

I can't figure out if this is my problem or if there's something else I'm missing. I felt great initially after eliminating gluten. Then stuff started to creep back, so I changed my antidepressant (had trace gluten-derived ingredients in the coating) and again felt better. I was still running into gluten frequently, so we made the house gluten-free, and that helped. Then we traveled over the summer and stayed in gluteny households, and then the school year started again. I work with 4 and 5 year olds, and breakfast, snack, and lunch are eaten in the classroom. Naturally much of it is gluten. My energy level has been sliding, and I'm back to being pretty flattened most of the time. I did an elimination diet, and determined that corn, dairy, and soy are also issues, so I avoid them. I react to things that some oat sensitive people have mentioned problems with, so I suspect that, though I haven't tested it yet. Am returning to meat after decades of veg life. I'm still just exhausted, and running into more joint pain than I had in a while.

When I ingest something with gluten CC, I get GI symptoms, headache, achiness, extreme fatigue, etc. I know I've CCed myself in the classroom by eating my lunch while doing other things. (I avoid that as much as possible, but there are days where it's either eat while working or don't eat at all...) What I'm trying to figure out is if the constant presence of gluten in my classroom could be contributing to my fatigue and returning joint pain, or if that's likely to be due to something else.

What do you think, oh wise super sensitives? My dad, who is diagnosed celiac (I am not) thinks I'm making too much out of this. Of course, he also is happy to chug some pepto and keep going, rather than look at where the CC is coming from...

I just tried Namaste bread mix and am quite pleased with it. Even my 5 year old, who has not enjoyed most attempts at gluten-free bread, liked it. I bought a few other mixes by them (they're corn, soy, and dairy free, which, sadly, I need), but haven't tried them yet.

I tried it a few times really wanting it to be OK, but got hit each time. Have to just make my own now.

Awesome. Thank you. For now I've just dropped all my supplements to see what happens, but if it turns out that they were contributing to my issues, I'll be in the market for gluten, corn, dairy, and soy-free supplements. No problem, right? (and I know people have many more restrictions than that, and that I'm really quite lucky. just still trying to wrap my head around it all.)

Yeah, I was wondering about that. We have a friend with a corn allergy, so I knew it was in everything, but I'm just starting to explore the extent to which that affects me. Are there any vitamins that DON'T have corn in them?