<<Disclaimer: Verify this information before applying it to your situation.>> I can't thank you all enough for taking the time to respond to my query, for sharing your personal experiences and suggestions. Your responses were both validating and very helpful! I have to admit I was a little surprised by the number of responses I received from those who do in fact experience an accidental gluten exposure with very similar symptoms to what I had described. Maybe it's time to add another chapter to a book for Celiacs! Anyway, I have pasted the responses I received below in case anyone else is wondering about the wide range of gluten responses. I summarized or copied the main idea of those that were very long . Thank you all again, so very much! Kim in PA 1) For what it's worth this is almost identical to the symptoms I think I experience. I was diagnosed 18 months ago and am 43 but I see very similar reaction. After an accidental gluten ingestion: - I rarely get diarrhea but after several that can happen - I get a sort of brain fog - The day after I become unbelievably tired - really, hard to move around - I am nearly always hot but I become very cold - I get waves of tingling in down the backs and fronts of my legs - not continunous, just like the feeling when your hair stands on end - I am normally ultra high energy and it just wipes me out - I can get a little more irritable - face creases somewhat It seems so weird that gluten could be causing this that I can't help but question whether it is gluten - however, my family around me say that they can see the effect of it. One friend says that she can see it in my face when she meets me. It lasts anywhere from a day to week, depending on how much - I am still trying to figure out how to avoid these gluten accidents. Over the last year, many of mine have come from eating in other people's houses. b 2)Hi Kim! Has your daughter been properly checked for thyroid/parathyroid issues, as her systems sound classic thyroid to me [not that I'm a doctor - just know of others who have thyroid issues]. If she's going through puberty, her hormones could be wreaking havoc on her thyroid or parathyroid, maybe - *may* explain episodic nature? Good luck getting to the root cause. 3) the only way to test this would be to purposely expose her to a gluten. Keeping a food log might be another alternative. 4) This seems much like my "different" reactions to topical creams, lotions, etc. that I sometimes have. I know we are not supposed to have intolerances to topical products, however I seem to have these types of reactions very similar to what you have described. It feels as if my blood has turned to ice water. I try to avoid topical applications containing wheat gluten as much as possible. Maybe this is your daughter's problem too. 5) I expect we are all guessing, but I would say, yes, of course. My minor exposures aren't like that, exactly, but they do feel like life- changing events. It's odd to have your body feel like it belongs to you, then suddenly to feel that you're in an alien body that just doesn't work. (It's kind of like the way your body feels when you're in labor!!) But I can always think of something I ate that has been OK before but now maybe has a "processed in a facility that also processes wheat" note on its label. Those warnings are real, even when the item in question is usually OK... Or I have been in someone's home where they have been baking, and I've breathed some of the flour. Or something like that which I couldn't predict or avoid. 6) Hi Kim, You have described many of the features of my gluten reactions. I also experience bowel symptoms, mental confusion, limbs that "go to sleep" and additional hearing loss (I have some hearing loss already. Gluten just makes it worse.) I hope my comments prove helpful. Best Wishes, Ron 7) Sounds like allergy to me. It could be to foods or airborn pollens. I bring this up because allergy manifests as a myriad of symptoms and changes all of the time. Good luck in finding answers. 8) Kim. From my own personal experience, I would say that she is having a gluten exposure attack. Her symptoms are pretty much in line with how I react when I accidently ingest gluten. I get "pins and needles" in my legs and feet (called peripheral neuropathy) and sometimes in the hands. It's pretty irritating and feels like my skin is on fire... usually worse in the middle of the night. I get severely cold, chilled and can't warm up, even if it's down right hot out. I get really severe muscle and joint aches and pain. Migranes, can't hear well, vision blurred, irritable and cranky. Typical reaction lasts from 10 to 14 days, although a really bad one can last for up to 3 weeks. I'd suggest taking a good hard look at what she's eating or exposed to. I raise chickens and have found that breathing the dust in the chicken coop causes me to get sick because of the wheat in their feed. 9) Kim, Two years after my celiac diagnosis I would have occasional days of "not feeling right." I got so cold that I eventually took my body temperature (during one of those episodes), and it had dropped a couple of degrees. In my case, I had developed an IgE allergy (later confirmed by blood test) to almonds. I loved almonds and ate them every day. I don't know about the tingly feeling - - but certainly all of your daughters other symptoms could be related to a food allergy. I don't know if a celiac IgG or IgA reaction could cause these symptoms - - but I would recommend that you look closely at the rest of her diet and see if something else could be causing it, just in case. Or if your insurance covers it, have do a full food allergy panel. good luck! 10)Given the other posting on checking with your doctor, I hesitate to give advice here, but I think since you have a child to be concerned about , that you should know that the symptoms you describle do seem to be gluten responses. Its how my son and I both react. Though he also gets extremely anxious, and I get bone pain. It usually takes three days for his restlessness to appear.SO when he gets leg pain and rolls around at night I count back three days to see what he might have had. He tosses and turns in his bed and says he feels as if he will explode. The tingling happens too , sometimes I have heard this can be B vitamins. Also I would have her thyroid levels checked by an endochrinologist. especially the being cold part can mean low thyroid function which is common among celiac. Although I have recently read somewhere that "bone cold" can be related to not breaking down certain proteins (IE celiac ) an enzyme blend (one without "MALTESE" (a malt derivative)might help with this. I use Epson salt baths for my son to detox (helps a lot) and also give him magnesium with boron regularly to help him absorb minerals better.this seems to really help the neurological ramifications of gluten. Good luck. Please let me know how she is doing and if you are able to find out anything. From one mom to another. Aren't we lucky to have the internet? 11)Yes! This is exactly how I react to a small gluten accident, such as very minor contamination. The amount of gluten I have ingested usually will also determine how long I have these feelings. And I can get much worse symptoms if the gluten accident was more severe. 12) I would think so. She only has these problems every so often and they are at the opposite spectrum of her usual behavior/mood/ health, so I'm betting that this is her reaction to gluten. I get tired and brain foggy...lethargic and don't feel like doing anything that requires thought. *Support summarization of posts, reply to the SENDER not the Celiac List* Archives are at: Http://Listserv.icors.org/SCRIPTS/WA-ICORS.EXE?LIST=CELIAC