rana

Funny, I find myself at times being needlessly mean or rude to my boyfriend (I'm typically a very kind and even keeled person!) and wondering if its gluten or that time of the month haha. Its usually one or the other. Poor guy... And my periods are WAY WORSE than they ever were in accordance with my gluten issues, there must be some relation going on.

I agree with the stance on supplements, I believe in them (I believe the earth provided us with everything we need, I got a really bad staph infection once, was prescribed tons of antibiotics, which I believe led to my gluten intolerance, so frustrating but a whole 'nother topic, and nothing worked. You know what did work? GARLIC! well, stabilized allicin. a combo of modern medicine and naturopathy at its best... sorry tangent) but realized they were making me sick. You're right, the regulations just aren't in place for supplements (not that any regulations for regular food are working in keeping me safe from gluten either at this point). I'm just way too sensitive. Its a shame, I know herbs are a powerful health tool. I would like to find a vit D supplement, though, so i might try that brand, thank you. Nice disclaimer, by the way, I'm sure its frustrating when things are misconstrued, the problem with this black and white text way of communication. I find it frustrating when people on this site don't realize that people just might be more sensitive than them. And it seems everyone's defintion of sensitive is different. I got minorely glutened yesterday when I ate a peppermint labled gluten free with no questionable ingredients (I knew better but still did it). If its processed, I just can't do it. A healthier way to live anyway I suppose! Gotta play the glad game

Hi Caroline, thanks for taking the time to try and help me! I am a lady (or at least a female hehe), so I suppose hormones could be playing a role. I am not sure if I've ever experienced "pooling" specifically, but I defintely, absolutely, experience the good ol' stomach bloat. My stomach is pretty much permanently bloated all the time right now with all this stuff going on and gets worse when I get glutened. If only I could wear sweat pants to work on those days . My digestion seems great otherwise, I can tolerate dairy like a champ (i took a long break from it while healing but am back because i couldn't help myself), and I can tolerate fruits / veggies I couldn't tolerate when first going gluten free. I do seem to void my bowels most days which I attribute to my green smoothie intake, otherwise I think I would have to deal with constipation pretty regularly (did you like my wording there? is that a pun!?). I try to drink plenty of water being in Colorado so I'm usually pretty good about that, but by no means perfect.

What herbs are you taking and which brands? and speaking of, Steph can I pick your brain one more time and ask if there are any brands of supplements you have found to be safe? I hate to not be taking any but I'm just too terrified right now and have gotten horribly ill off several brands that say "gluten free" right on the label. I really seem to be highly sensitive right now. Does that ever wear off for some people?

I still seem to be having some hot episodes here and there (i'm only 29 so no menopause yet!) but they have come down drastically with the absence of those corn chips. Sigh... I miss them. Now I'm wondering if its CC or a corn intolerance and hoping nothing else pops up to bother me, I am so ready to feel "normal". Or at least my version of it.

Thank you both for your input... I do believe stress is playing a role, but I also believe gluten must still be getting in somewhere. I have been doing the swapping in and out of things (i went two days without using traditional toothpaste don't tell!) and no definitive results. My lasest guess is the On The Border corn chips I've been eating, I usually eat them at night, it was my last hope of being able to eat easy, ready made, food and i was desperate to hold onto them. So no more chips for a while, maybe forever if that's proving to be it.

Steph, I see you on a lot of posts and have come to trust your opinion as you seem like one of the few people on here who really is pretty sensitive. Thank you for being a helpful presence on this site. Is there any kind of peanut butter you can use? I would love to have peanut butter back but am too scared to try any. Also, is there a source you know of for safe nuts? I have tried nu tson line but became suspiscious of their almond flour and stopped (i'm not sure if its the flour or not, further testing needed, but don't want to test until i am truly gluten free for several weeks, which i'm close to being able to do but not there yet). Thanks again!

thank you everyone! Its obvious i need to check for other intolerances. I don't eat any soy at the moment (no processed foods so its not sneaking in) but I do eat a little corn and one serving of brown rice a day. The corn is eaten at night though so that's something to consider! I used to cut out all grains (did the Specific Carbohydrate Diet for a while, it really helped, but now I follow it loosely which sort of defeats the purpose of it).

notme! - good name - i just put that together last night myself, i know i was majorely stressed at the prospect of getting this job, then way more stressed when i actually got it, its intimdating to join the world again after gluten takes you out of it, and i'm thinking the stress maybe triggered my blood sugar issues again, regardless of gluten. And i do still think that maybe that aquafresh toothpaste was subtely nailing me, it just makes so much sense the more i look back at other mystery glutenings (i would attribute it to a meal, then try that same food later and no reaction, etc, it all times out to when i would brush my teeth!). but who really knows.

anyway, thanks again for everyone's input! I'm seeing some improvement over the past few days, hopefully i can keep that momemtum up!

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?

well you're the first person i've heard from that also has morning episodes. this only started for me in the last few weeks and i can't for the life of me think of what changed. In the past these blood sugar issues have always been linked to gluten, so i hope i'm not still getting cc'ed somewhere because i sure don't know where at this point! i don't even take any vitamins right now or meds while i'm trying to figure out all gluten sources (i drink green smoothies for natural vitamins for now). i'm beginning to realize i need to check for other intolerances! i love corn. i hope its not that...

I'd try the blood sugar thing first, seems the most obvious.

Try adding fiber in every meal, it stretches the protein.

Eat every 2 hours before you're hungry.

I'm sure you know all of this, but just thought I'd toss it in.

I went through a phase with blood sugar. It was awful.

thank you! i will do that... i did know this but i haven't been doing it lately. i think i finally, finally, cut all the cc gluten sources out of my diet in the last few weeks so i'm sure that changes a person's body chemistry and could trigger bloog sugar issues. hashing this out on this forum has made me realize its got to be blood sugar. thank you again.

Everyone is different, but I absolutely react to Chex cereals and have heard other people on here say the same thing. I went on the Specific Carbohydrate Diet when I was first diagnosed and miserably sick and getting CCed all the time. It's admittedly a huge pain in the butt, especially for a college student, but maybe something to consider. It really gave my body the break it needed.

THANK YOU everyone for taking the time to reply, really really appreciate it!

To answer your questions I don't feel better after a BM, but I have been a bit more clogged up than usual and I did actually wonder if that was playing a role (if nothing more than gluten is staying in my system longer, not sure if that makes sense though). I have been wondering if its blood sugar issues and not glutening. I get blood sugar issues if i get glutened. these mysterious morning episodes have made my stomach protude like crazy as if a gluten attack (that symptom doesn't make sense to me blood sugar wise that's why I was thinking it was gluten), I've also had bouts of brian fog and irratibilty with it, which for me is a tell tale gluten sign, but again, that could be blood sugar i suppose... my biggest symptom throughout the day is armpit sweating (so attractive!) and feeling hot in the cheeks, i get these when i get glutened as well. its just that same feeling, like you know its gluten, you just know, but maybe i am wrong. i hope i'm wrong!

I don't do anything in particular at 11am, i've even kept track of snacks, gum, chapstick, lotion, coffee (i buy whole beans, wash them, then grind them, i'm that paranoid)and no matter what i switch out or refrain from i seem to have the same result. Maybe I've cut down my food too much out of paranoia and my body is going haywire from it. i would hate that i'm bothering you guys if its just blood sugar, and admittedly i experience hunger pains throughout the day (something i cherish and didn't experience for years), when usually if i'm glutened i don't feel hungry for hours after if not days. these are minor attacks, but enough to distract me from learning a new job.

Diandliam, thank you for your offer of help finding safe cleaning products, i will take you up on that! (i'm at work now though, shhhh) What toothpaste do you use? I did switch to Desert Organics I think? and used it last night. was too scared to use it again today, and admittedly i did do better today overall, but i'm realizing its probably not toothpaste related. What liquid hand soap is safe? that's one i've been worried about, i use the off brand Equate maybe i shouldn't.

Is it possible to have 'phantom' symptoms? Like maybe I've been getting glutened more than usual lately and it takes a while for symptoms to completely disappear? this is so confusing to me because i didn't use to have this problem, i would wake up feeling great and only have blood sugar issues if i got glutened. maybe its new job stress coupled with everything. i have insurance again so i'll hit up the doc for other intolerances and blood sugar issues.

Hello! I need some help/insight into my current situation: I am getting glutened first thing in the morning and I cannot for the life of me figure it out. I have learned I'm pretty sensitive (I eat nothing processed, at the moment in attempts to figure this out I am not even using spices, just meat and veggies and rice and i wash all those things as best i can, gluten-free kitchen and all that). The attack starts before I even get in the shower, this means NOTHING has even come near my mouth at this point. I have checked all my toiletries and even replaced them all with those that actually say gluten free on them. I suspected the chapstick I was using at night before I fell asleep (figure it doesn't really enter my stomach until I wake up and swallow, lick my lips, etc), I got rid of it, no help. Then I really thought I had it with my toothpaste (its aquafresh, i called about my previous aquafresh but realized i got a slightly different kind this time), same theory as the chapstick and would explain why i have a secondary gluten reaction come about 11am every day (morning glutening from brushing at night, afternoon from the morning brushing). I was so excited to wake up today convinced i had figured it out and would have the first real gluten free day in recent memory (if ever), but no luck. I really can't think of anything else, and it almost doesn't even seem food related at this point, I feel fine by the time I get home after work every day regardless of dietary changes (this is a minor cc reaction, but still annoying) does anyone have any ideas? My lotion is gluten free, I use Tide degerent and I believe Ajax dish soap (I have to double check though). I realize you really need to figure these things out for yourself, but like I said, I'm out of ideas and I just started a new job (after not working for a year to recover, I was so sick) so I really can't afford to be sick everyday like this. Any thoughts are very much appreciated!

Last year I got roped into an out of town Thanksgiving with my family, while normally this would be exciting I couldn't help but dread it a little, it seemed like there was no way I could get away gluten free or enjoy myself since I'd be worried the whole time. A day or two before we left I had my own personal Thanksgiving, made everything I wanted gluten free in my safe kitchen, and sat down and ate it. I then packed a cooler with leftovers and put together a really nice plate so when I got to my cousin's house I simply had to reheat it and sit down and eat. This worked out great. No one even noticed I had a different plate than them, I already had Thanksgiving out of my system so the pressure was off to try and enjoy myself. A little more work, but well worth it.

Its a shame your immediate family isn't more understanding, I'm appalled at some of these replies and what people have to deal with. I am so sensitive to gluten that I wouldn't eat at a relatives house even if they were kind enough to make the meal gluten free, so it sort of lets them off the hook in the first place...

Anyone else? Everyone who is as sensitive to gluten as I am, what do you do about meat?

i just realized that Hormel bacon (the natural kind that says gluten free in the cardboard box) has been glutening me after all, it was just so small at first it took me eating it for several weeks to finally realize that was the problem. So no more processed meat for me, either.... I know this post is a little dated now but I had to come back and say this!

Its so nice to see so many helpful replies, I get on here sometimes after getting glutened to just to feel better about everything. For me, my denial kept me from getting healthy for a long time and not wanting to admit or simply just didn't realize how sensitive I really was to gluten. I knew I shouldn't eat certain things, that little voice in my head (which is amazingly never wrong) would tell me to not eat it, but I would, because I wanted it, because I felt like I deserved it, because my friends were eating it, then I'd pay the price. I still do this sometimes and its been two years. Once you finally start to feel better, it took me almost two years, you have too much to lose and you don't bother making needlessly risky decisions. You don't even miss that food, but, boy, you sure grieve its loss for a while. At least I did.

Another thing that helped me tremendously was the addition of green smoothies to my diet, basically fruit smoothies with spinach or kale or some other greens added in. It looks ridiculous but tastes delicious, you can't taste the greens I promise! I had to be really careful at first which fruits I put in as I couldn't tolerate a lot of raw fruit or veggies at the time, but I could tell my body was finally getting the nutrients it so badly needed to heal and in a format that's easy for the body to absorb. I drink them every day now, I even crave them. Its way easier to get the five in when you can just drink it down....

we're not saying they're lying and adding wheat, we're saying there's always the possibility of cross contamination. funny how when i lived in Georgia for a year where there is no Kroger stores, i was feeling much better. now that I've moved and been buying Kroger brand to save money, I'm suddenly getting nailed left and right. I'm not sure what's going on, I'm not telling people to stay away from that brand, simply sharing my experience and curious if anyone else had similar issues. I will shop at their store and appreciate their focus on gluten free items, but will not buy their brand any longer. I know without a doubt their veggies make me ill. I've read on here Birdseye is the way to go...

thanks for all the useful feedback! sometimes its just nice being validated that you're not crazy and that this is hard for everyone. Funny, I was just talking with my boyfriend last night and we were saying how we would like to acquire our meat more locally, it seems the only really safe route and the only really healthy way to go. We'll have to start looking into that, we live in a good area to make that happen. I have been racking my brain and can't think of anything in the soup that would have made me sick, but you never know, and I have a completely gluten free kitchen (A few months after being diagnosed I realized I was getting CC-ed like crazy, I moved out of a shared living arrangement with several gluteny roommates and bought all new kitchen supplies)...

Anyway thanks again! I'm going to pay much more attention to what kind of meat I buy and pinch pennies even more and buy a little higher quality. And keep that food diary going, our work is never done!

Anyone else? Everyone who is as sensitive to gluten as I am, what do you do about meat?

wow, i just posted a very similar question before I read this post. I swear I am getting glutened off of Kroger brand ground beef. I feel much like you do, I am so sensitive I can't seem to win no matter what I do. I have, however, had good luck with Jennie-O turkey sausages and the Hormel no preservative bacon, which contradicts your reaction. this is way too hard, boy has our food supply been severely screwed up. but if it helps i eat a lot of Boar's Head and never had a reaction, and like i said, i am HIGHLY sensitive. I get it sliced at Sunshine Market where the slicers are used exclusively for Boar's Head meat, otherwise I would be worried about CC.

Okay, so I've been diagnosed for two years now and have noticed that since I've healed a lot of the initial damage and am somewhat healthy again, I am EXTREMELY sensitive, much more sensitive than I initially thought. Basically if it's not made in a dedicated facility, I will get glutened, although be it minor. I try to stay away from processed foods and eat naturally gluten free things. But still, I have been getting glutened a tiny bit here and there lately and have kept a food diary to try and narrow things down. Its been frustrating to say the least. I have realized, with a pretty high degree of certainty, that Kroger brand frozen vegetables give me a reaction (it took me a while to narrow this down as I thought there was no way vegetables would be the problem, but I am positive its them) along with Kroger brand V8 (although the v8 says gluten free on the can).

The other day I picked up some Kroger brand ground beef and noticed on the label it said 'with natural flavors'. Alarm bells went off but I shrugged it off and ate it in some homemade soup - had a reaction. Ate some cheeseburgers today using Kroger ground beef and had a reaction as well. Its very minor, a CC kind of a reaction, but no less exhausting and irritating.

I can't help but think I'm crazy. Can ground beef, with no seasonings or anything, contain gluten? Has anyone else had this problem with their ground beef or with any other Kroger products? I know the easy answer is (as I've seen on many previous posts) I'm over thinking it and probably have some other allergy I don't know about, but these reactions seem very gluten specific in nature. I seem to tolerate everything else just fine (including steak & other red meat). I can't seem to win no matter how hard I try... its always something.

Any thoughts are much appreciated! I don't know what I would do without this website....

I can't help but add to this thread even if a bit dated, I have eaten at P.F. Chang's twice now and had very minor reactions both times (I'm guessing cross contamination, I am quite sensitive). I love this place, I can't help but want to try it again, but so far they are zero for two. Fair warning!

In case you aren't already, you would probably benefit from using Stevia in place of sugar. Look for the pure powder without any other ingredients, and keep in mind that a teaspoon or less can replace an entire cup of sugar. So you'll use very very small amounts - sorta like the way you might add salt, spice, or other seasoning to your food. Give yourself some time to get used to it too. The taste isn't exactly the same as sugar, and the intense sweetness can make it tricky to judge how much to use at first, until you've gotten familiar with it.

About the soy protein drinks; Although soy can have some benefits, it can also lower thyroid function depending on the person, and the amount you consume. That can certainly make you feel fatigued, especially if consumed regularly. So if you find you need to supplement protein, it might be better to use a pea protein powder instead. Or, eat more easily digestible protein-rich foods, such as peas, beans, lentils, etc. AFAIK meats are not as easily digested, but we're all different, and you should stick with whatever works best for you.

I've been wondering about the adverse affects of soy after reading a bit about it on this site and elsewhere- I think I will switch. Going to check out Stevia as well, I think sugar is one of my worst enemies right now (noticed my vision problems are actually at their worst immediately after consuming processed foods / sugar). Thanks for the insight, all this is much appreciated. Funny how modern living is literally making us sick.

Thanks for the tip! I am definitely eating enough protein (I even drink soy protein shakes), but I do think I was on overloading on the carbs and sugar, then crashing later, just being a giant yo-yo mess... More fat I can handle, and will give that go as I see your point. Girly isn't my style and living at such altitude I don't have to really worry about gaining weight, seems like my body works twice as hard at everything up here. THANK YOU AGAIN

Thank you so much! I really appreciate the help and insight... It really all comes down to having to really listen to your own body and I think those tips will definitely help me along the way. Sometimes I think being under additional stress kills my appetite and makes it hard for me to eat enough to sustain myself for very long, right now I seem to need to eat every 1.5 hours, which is a bit excessive. Thanks again, I sincerely appreciate it!!

Hello, I need help! After a year of intense symptoms (and several years of mild ones) I finally went to the doctor and for once the doctor actually knew what was wrong, that evil evil gluten. But my doctor couldn't help me much beyond the blood test... So I have been trying my best to be gluten free for about six months now and was feeling A LOT better for a while there, but now I seem to have hit a few more roadblocks. First of all I know gluten has probably been sneaking in here and there (I'm getting better as I go of course), so I think I need to do a serious detox diet and let my body completely heal, but I'm having trouble figuring out what to stay away from and what to not stay away from. Also, now I'm having trouble maintaining a normal blood sugar level. I am constantly crashing, spotty vision being my worst symptom, it seems like I have to eat every hour? There's a balance I can't seem to find, I am constantly going crazy, irritable, and that darn spotty vision is the worst. I live at high altitude, 9,600 feet, and wonder if this is amplifying my symptoms as I know we have to eat more carbs etc. to live up here. I can't stand feeling like this anymore.

Does anyone have this problem of maintaining a normal blood sugar level? Is it related to gluten intolerance? My body seems to be going completely haywire again (although not the intense gastro symptoms like before unless I 'got glutened'). I have tried to do my research online but sometimes have trouble really grasping it all (diabetic jargon, GI diets, I can't keep up)... I would sure appreciate any help or insight, I don't know what I would do without this site! If anyone can help me figure out what to stay away from and what I should eat while I'm trying to let my body heal, yet not set myself up to crash all day long, I will kiss their feet.