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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.


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