cait

Yep, me too. I start off feeling glutened but don't feel as lousy for as long. I'm still having trouble accepting this one, because dammit, I LIKE corn.

Thanks! The kids aren't mine biologically, so we're not worried about them and gluten right now. Otherwise, yes, we'd be getting them tested.

Our home is gluten-free. We figured that one out pretty quickly. The kids eat gluten outside of the home sometimes though, so there's always the chance that they're getting me that way, no matter how careful we're trying to be. The larger possibility is my classroom, though. I teach 4 and 5 year olds, and they eat in the classroom. I wash my hands as often as possible, and we do our best to clean up after lunch, but it's pretty much a gluten nightmare. I was hoping doing an elimination diet would help me sort out whether I was reacting to CC at school or other things, but it's pretty impossible to sort out right now. I'll keep on keepin' on and see what happens...

I have a soy intolerance as well (I learned that through IgG testing) and my reactions to soy are similar to Ravenwood's. Lately, I have been able to tolerate small amounts of mayo on my sandwich. (yaaay!) And yes, soybean is a legume, not a grain. Why so many celiacs develop a secondary intolerance to soybean has never been explained to me and I cannot find any research on it. I have looked, believe me. Many food intolerances do clear up after the gut is healed. Others do not and some people have to avoid dairy and soy for life.

The reality is, we live in a gluten-filled world.

Wheat and wheat starches, binders and fillers are used in many products. To say that NOTHING is safe is a bit of an overstatement, I believe, and creates a sort of paranoia that makes it worse for people already frightened by the prospect of negotiating a new lifestyle. There are many "celiac myths" and we sometimes have to take a calm look at what is really presenting a problem and what is actually just still inflammation in the GI tract from celiac. I once read that the glue on envelopes had gluten in them and avoided licking them for months. It's a myth.

In the end, you have to find what works for you.

Here's the rule: when it doubt, throw it out! Try it again later.

You can pay for expensive tests to see what may be a culprit or you can just avoid what food you think may be a problem and see if you feel better.

Unless you are experiencing anaphylactic reactions or wheezing or throat closing--it is not an allergic response to food ---and allergy testing will yield nothing. Many people go this route --only to be disappointed. (me, too!!--my throat closing, difficulty swallowing, hoarseness, facial swelling, red skin, shortness of breath and wheezing -- all celiac-related--anemia and vitamin deficiencies--and thankfully, most of these symptoms have vanished after going gluten-free) There is no playbook to follow for all this, just other people's experiences--and as you can see from this forum--those experiences VARY. Some folks have issues with gluten-free chex, and some do not. Some can use BRM flours and some cannot. And on and on....Everyone is different.

Even after my DX, when I was still very, very ill, NOTHING agreed with me. NOTHING. Even water gagged me. In time, as my inflamed GI tract settled down, foods I thought were a problem (and I ran the gamut...Oh crap!is it eggs? nuts? salicylates? fructose ? pork? beans? cabbage? the air I breathe?? and on an on) actually were NOT an issue at all...they just were difficult to digest because of the damage that was done and now, they are not.

You can make yourself crazy thinking every food is a problem. I made myself sick with that for a few months, even throwing out what was likely perfectly good food and flours because someone on here said it gave them the big D or C or facial swelling---and because I still had all those symptoms, I figured THAT was it! Poor hubby switched brands of flours 6 times making our bread because we thought--oh, that must be what's still creating issues for me!! (it wasn't--I was just still healing)

The day I read one sentence from a voice of reason on here that said "Sometimes, you still feel lousy because ...you still feel lousy ... and you are healing"....I stopped fretting about every damn morsel that went inside my mouth. I look at this healing phase now as "It is what it is". I do not like that of course, because I want to be better RIGHT NOW DAMMIT!! My doctor said the same thing. It may take 6 -24 months to heal the intestinal lining and you may feel lousy until that happens. That's the reality.

Read labels, eat as plainly as possible and try to relax about it. Chronic stressing over food just makes an already difficult passage all the more traumatic. Eat the gluten-free foods you and your family like best. Avoid too many packaged gluten-free foods at first because they contain many different ingredients and if you feel ill after eating it, it is too difficult to sort out what is the problem. A rule to follow--if there are more than 6 ingredients listed, and some of those words are indecipherable ....you are diving into muddy waters. Plain, simple foods work best.

Just one humble opinion from someone who has been there/done that.

I wish you well!!

I totally agree, and am not trying to spread paranoia or be overly panicked about things. But since, after 5 months gluten-free, I'm experiencing an increase in symptoms it seemed worth trying to figure out if other foods were contributing. I was just frustrated that in the process of trying to simplify and make myself feel better I actually made myself feel worse...

Oats and rice need very different growing conditions so I don't think they would be used as a cover crop. Lundberg does have some mixes that have barley so I think if they are CC'd it is barley CC. I rinse any rice I use very well before cooking and have never had an issue with their products.

They list it on their website, and others here have mentioned it as well. I don't necessarily know that I DO have a problem with their rice, but was frustrated to see that it was a possibility.

I hope you find your answer soon and start to feel better.

The only thing I was trying to say earlier when I suggested it would not be an issue (before I knew some people react to oat CC in the BRM products).....isn't Lundberg's solely a RICE company? If so, where exactly would the oats come from that would cause this CC issue? I'm a bit perplexed by that.

They use oats as one of their cover crops. I don't know for sure that that's what my problem is. Plenty of people eat their rice and have no problem. But when I saw someone else mention it here it occurred to me that that could be part of why I've felt so lousy this week.

Oh, I love potatoes of all kinds (though I'm supposed to be off the white ones during this phase of the elimination diet). Oddly, though, both kids are anti potato in any form (even fries and chips). I don't have any intense need to eat rice except that it's easy and acceptable to all members of the family (and we do eat brown rice, not white rice). I don't think I have a problem with rice itself, but wondered if the oat contamination that some people have experienced with lundbergs was part of why I felt increasingly rotten after a week of the elimination diet. Because not only were we eating more rice, but I was snacking on their rice cakes (which I usually don't eat) and using their brown rice syrup in a few recipes.

I really wish there were some sort of plug in diagnostic device that would just tell me what I can't eat so I could get on with my life.

No, seriously, that's why rice is awesome. It adds texture and volume whilst absorbing the flavour of whatever it is mixed in with. It also adds cheap calories that are not totally empty, like most cheap calories are.

I'm a poor post-college student. I need things like this, which is what wheat pasta used to be for me.

Yes, and for us it's trying to find things that the kids will eat too. They (ages 3 and 5) have rolled with the removal of gluten from their lives (had to make the house gluten-free to keep me from getting CCd all the time), but are still picky young beings. They'll eat rice but won't eat quinoa, and we try not to make separate meals for everyone. Ugh. Feeding everyone was hard enough before all of this.

I read today that some people have trouble with Lundberg rice due to oat contamination. For those who react to that cross contamination, is there a brand of rice that doesn't cause problems for you?

When I last read, Lundberg and Bob's Red Mill gluten-free products are made in dedicated gluten-free facilities, according to their websites and company statements-- so I am not sure why that would be an issue.

Yes, they are totally fine on the gluten front, but I have read more than one person here saying that they have trouble with them because of oat sensitivity. This seems possible for me, since I had trouble with a recipe earlier in the week and tolerated it just fine using non-BRM flours. It would also explain why I've had mixed luck tolerating homemade gluten-free bread. I haven't tried actual oats yet because I haven't been gluten-free terribly long yet. Don't know whether it's a better idea to try them and see if I actually do have a reaction to them or just eliminate possible oat contaminated products for now.

I was expecting withdrawal, but was hoping it would be over by now. I'll give it some time I guess, but trying to eliminate possible oat CC is further complicating things. Also, I've been vegetarian for at least 15 years, and haven't eaten red meat in longer than that, but knowing for sure that gluten and dairy are out and that soy is another likely contender, I'm adding some fish and meat back in. But I don't LIKE it. So no chocolate + food I don't like + no improvement = cranky me. I don't think I can handle going grain free yet, but I guess it's something to try if nothing else works.

Before I drop rice, ARE there any brands that are free of gluten AND oat contamination? I'd like to rule out the CC possibility first.

I'm a week into an elimination diet, trying to figure out if I am reacting to other things or if I'm just having frequent glutenings courtesy of the kids in my class. This week has been incredibly frustrating because not only can I not eat anything, I'm also not feeling any better. In fact I'm more exhausted than I've been in a while. I think I'm eating enough in terms of nutrients and quantity, so I'm pretty sure the exhaustion is not from that.

I'm starting to wonder if I'm sensitive to oats. I've just avoided them since going gluten-free, but am wondering if I'm reacting to oat CC in some of the things we've been using, especially after reading something today saying that Lundberg rice may be oat CCd. And, of course, we've been using their rice, rice cakes, and brown rice syrup all week. If that's the case, what rice and/or flours ARE OK? I know Bob's stuff is often oat contaminated. Are there any gluten-free flours or rice products that are NOT CCd by oats?

Is there anything ELSE I should be aware of? This process is making me crazy.

Yes! I'd been off coffee for a bit, then started drinking it again recently. Can't tolerate it anymore. Am also a chai junkie now. What are your favorite kinds?

Well I'd rather discover what's making me ill, than stay ill.

If I'm sensitive enough to react to CC in corn, assuming that's the problem, is HFCS an ingredient I can count on being gluten free or not? If I react to corn CC, I'd assume that I'd have very, very minor reactions to HFCS and other corn byproducts, right?

I think it's less likely that you're reacting to inherent CC in corn and more likely that either the corn flour was processed in a factory that also deals with wheat, or that you're reacting to corn in general for reasons other than CC. BRM marks things pretty clearly. If the corn flour says gluten free, then it's probably a problem with corn and you should avoid corn products for a while and then test them to see if you get the same reaction. If the bag does not say gluten free, then maybe that flour was processed in a BRM factory that also processes gluten grains and therefore WAS contaminated. In that case, corn in general might not be a problem. Just corn processed in a plant with wheat, etc.

For me, getting rid of gluten in food without worrying about cookware was enough to give me an idea that it was going to work. I stopped using the toaster right away, but we used shared cookware until it was clear that that did NOT work for me. I was very careful about food from the beginning, but it took a week or so until my sensitivity was high enough that cookware was an issue. Some people require that level of vigilance from the beginning though.

BRM makes a gluten-free corn flour and a non-gluten-free (presumably the same thing but manufactured in different plants). If you accidentally grabbed the wrong bag, it could be CC from that. But corn affects some people in ways similar to gluten, so it could also be that. Sorry it made you feel lousy. Discovering new problems sucks.

Our kids are still pretty young (3 and 5), and while they are definitely learning about being careful, it was just too hard to have a shared kitchen. We're gluten-free with small, very careful exceptions in our house now. The rest of the family eats gluten when they're out, but we try not to bring it into the house. I really didn't want to impose it on everyone else, but I just kept getting hit by CC, and the paranoia about it (not to mention having me flattened by it) wasn't good for anyone.

Yep, me too.

And totally with you on the can't get warm once I'm cold thing. It's like it gets to my core and no amount of warming from the outside fixes it.

YES! I'm always always always cold. And miserable when I'm cold. Friends started referring to one particular blanket as my "soul" because I was always huddled under it on the couch. It may be changing slightly, but it's hard to tell yet. I definitely feel better enough that I'm not always on the couch at least...

June/July 2001, during a time when I was working in the woods and doing a lot of biking on various trails, I developed a bullseye rash, then fever. Since I had minimal health insurance then, I went to a college health clinic and was told it was not lyme. They gave me a course of ammoxicillin for whatever the infection was. I took a dose and quickly spiked a much higher fever and stronger symptoms (herx, anyone?). They changed my antibiotic to augmentin, I improved enough, continued to wonder if it had been Lyme, but couldn't do anything about it, so hoped for the best.

After a few years of going to doctors for ongoing fatigue and other vague symptoms (and being told "as you get older sometimes you have less energy." At the age of 24.) someone finally tested me for Lyme, and it was positive. I ended up with a LLMD, and went through years of treatment without major improvement. I finally decided that I probably just had residual damage from the Lyme, and that I just had to deal with it. Last spring, after a year of increasing GI trouble and ridiculous pain and fatigue, I eliminated gluten. My dad has celiac, so it seemed like a logical thing to try even though my blood tests were negative. It was the first thing in 10 years that really made a difference (other than IV rocephin, which my insurance stopped covering, leading to a return of symptoms). I figured maybe a good bit of the stuff I'd attributed to Lyme was actually gluten related.

I'm still up and down a lot, especially with the return to the school year. I've been wondering if there are other intolerances going on, and now that I've read bits of this thread, I wonder if Lyme is still a player. How does one even begin to sort all of this out?

Indian food is generally pretty safe, but I've been glutened by it. It was with great sadness that I discovered that malai kofta is generally not gluten free. Sigh.

I would guess that the papadum did it. I think they are usually fried, and would probably be CCed by samosas or other fried things. I'm sorry you're feeling lousy. I hope it passes quickly.

I do have an eating disorder history, so I approach all of this with a little fear. For years my life was governed by rules about food and restrictions I placed on myself that were not healthy and did not make me feel good. Now that I'm finally in a place where I am more relaxed and healthy about my relationship to food, it's hard to have to put restrictions back into place. So far the gluten one is mostly OK. I feel better enough that it's worth it, even when I'm feeling sad/mad/whatever in certain situations. It's not doing crazy things to my brain or self image yet. I'm relying a little more heavily on chocolate than I'd like to be, but since bread and chocolate were my two favorite things, that's probably somewhat normal. However, I think I'm starting to have more issues with dairy. Or something. I should probably do some elimination to try to figure some things out. I just can't make myself do it yet. I'm afraid of going back to crazy ways of thinking. I don't WANT to have to give something else up. I worry that people will think that all of this is just a return of my eating disorder behavior, especially since I was losing weight again before figuring out the gluten problem.

It's all a big tangle in my head, and I wish that the things I need to do to make my body healthier didn't have to shake up the tenuous healthy relationship I'd established with food.

Days when the school provides lunch for staff. Being able to eat with friends without feeling like an ass%$@# or worrying about CC.

Cool. Will have to look at those. I'm sort of seeing this year as my test. If I can make it through without major issue, then maybe I can stay in the classroom. If not, then it's time to look at non-classroom jobs. Just sucks that gluten has to be the driver for that.

Of course, my school is moving to a new building next year. There is enough space for a cafeteria, but the little guys will still eat in the classroom. I've told them if we ever get a celiac kid we're going to have issues with that...

Poor you, having double the fun with the grains.

I've had issues with the two places I've tried, but I want to try them again once I'm more consistently clean to make sure that it wasn't something else I was reacting to. I think it really depends on your level of sensitivity and the particular restaurant's practices.