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13) Hi Kim,

What you are describing sounds very famiar....similar to a  
description of an anxiety attack or aura (small seizure warning).

I have many diagnosis' over the past 30 years.

Finally, I have the right one!

A vitamin deficiency, known as Pyroluria.

Below is my story and a letter that I have been circulating, in hopes  
to help others with this rarely diagnosed Vitamin Deficiency.....   
Very easy to take care of with strict diet, mega doses of vitamin  
therapy, and possible small doses of prescription medications.

If you have any questions, feel free to ask me anything that you  
wish.  I am more than happy to help!

All of my "symptoms" were mis-diagnosis'. . .

The condition I have is a type of Schizophrenic Porphyria called  
Pyroluria.

3 months after treatment life was normal for the first time in over  
30 years!

Please check your daughter for zinc deficiency using a simple zinc  
test that I have provided a link to.  It's so easy, so  
inexpensive. . . and if the person tastes a metalic taste. . .then  
they are sufficient in zinc....  if the Zinc Status liquid tastes  
like plain water. . .then that individual is "deficient" in zinc and  
needs to increase their Zinc intake.

Be well...

And don't give up looking for the answers...

You will find them!

I did. :o)

Respectfully,

Ona
Long Beach, CA

14)Have a Ttg tested to see if she has gotten some gluten by mistake.

Pat Minnigh

15) I see so many posts to this list about all kinds of symptoms of this
or that -- tingling, headaches, weakness in limbs, skin problems
(which may or may not be DH) -- seemingly seeking to find out if
others with CD have experienced similar problems.

I just want to emphatically say that there are probably some serious
diseases out there that people on this list might truly have, and
having reactions to gluten MAY make them worse.  And NOT eating
gluten may IMPROVE symptoms dramatically.  But gluten may NOT be the
cause, and you may still have the disease.  If you have a persistent
problem (even if it improves with going GF), my advice is to be sure
you do not leave your diagnosis to just asking others on this list if
they've experienced anything similar.  GO TO YOUR DOCTOR and MAKE
SURE to have diagnostic tests.

16) I think it is important that Celiacs and Gluten Sensitive people  
try to find out what other foods they mazy be having IgA reactions  
to. Enterolab has the best tests for this and in fact the only  
accurate ones I know about. I was found to have IgA reactions to  
three different proteins in just milk plus reactions to soy, and  
yeast and eggs.

That being said, I suspect that she is having gluten reactions of the  
nerve variety. Gluten seems to proliferate small nerve fibers and I  
don't think the tests for measuring these kinds of  neurological  
reactions are sensitive enough to measure this.

There are two neurologists that have done wonderful research on  
Celiac and Neuropathy. If you "google"   "Celiac Latov" and "Celiac  
Hadjivasseliou" you will find all kinds of information about what  
gluten does to the nervous system.

The truth is Celiac is much more insidious and complex than any of  
the doctors know and your daughter must always be scrupulously  
careful about what she eats and also what other sensitivities might  
be. It is very difficult as you must know.  All of us are in danger  
of other autoimmune diseases and there is almost no research about  
this. The doctors I find are almost total blanks where this is  
concerned and in fast I think a lot of them have no belief in it at all.

I wish you both the best.

17)Kim,

Have you considered bipolar disorder?  My daughter suffers from this, so
the symptoms seem familiar to me.

Good luck,

Sue

18) I would want to rule out diabetis, hypoglycemia, and Addison's  
disease. They can have similar symptoms. (In addition to celiac  
disease, and a couple of other things, I have hypoglycemia and a very  
mild case of Addison's, which is essentially low adrenal production.  
For Addison's look for low blood pressure and low cortisol levels.)

Angela Taylor

19)Make sure they've checked her thyroid - I had similar syptoms from
underactive thyroid.

20)These symptoms sound like my husband's symptoms.  We know when he  
accidentally ingested gluten, because he gets tingly, numbing  
feelings in his hands, arms and thighs.

It sounds like accidental gluten.  She should write down every single  
thing she eats on a daily basis.  Perhaps something at school?

Veronica

21)I read your query and myself and my two girls have been diagnosed  
with celiac. Each of us have experienced the feelings you are  
describing. The last year and a half we have done our best to stay  
gluten free but we have had a few accidental gluten ingestion's  and  
a few we think ingestion's.  We are still in the learning stages. So  
we think those feelings come with ingestion but could not say 100%  
that gluten is the cause. I felt the feelings almost constantly the  
last couple of years before I was diagnosed and rarely feel them now.  
It is a terrible way to feel especially for someone with tons of  
energy!! I am sorry not to be more helpful. But I thought with the  
other info you get little pieces may be useful.    donna

22) yes, it sounds like a gluten reaction, do you have wheat in the  
house?  especially bad is flour, there should not be any wheat flour  
in the house, because if poofs up in the air & gets in and on  
everything.  After 2 years she is probably very sensitive to gluten,  
even if someone ate a sandwich & touched something & then she touches  
it - enough to make her sick, if she puts food in her mouth before  
washing her hands...

23)Hi Kim,
  I am also in Pa!  I'm just north of Phila.  Anyway,  my 7 year old  
is the one with Celiac.  We have never been ABSOLUTELY sure when she  
has had gluten.  We are strict, but there have been times that we  
wonder if there was a contamination issue or an ingredient change  
that we didn't know about. What she will say is that something is  
strange and that she feels like she is "missing something".  She  
can't seem to describe it any other way.  She also gets what I call  
"PMSy".  Very sensitive and emotional, tired and irritable.  She  has  
achiness in her legs and chest.  We have never been able to figure it  
out for sure.  Interesting that your daughter is having similar  
symptoms.   It really makes me wonder/worry that my daughter is  
getting hidden gluten.  Her last blood work in Nov was fine.  Let me  
know if you get any good input from others.
Nancy

24)  It seems almost like a circulation issue or deficiency of  
something.
Her extremities get tingly and she's cold and tired--that would make me
think the blood isn't carrying the oxygen it needs or something. Anemia?
Did they test her blood for iron? If you don't have the iron you need,
your blood has trouble carrying enough oxygen and it can make you feel
very tired. Also, Vitamin B-12 deficiency can produce a tingling
sensation in hands and feet. Vit B-12 is often a problem for celiac
people to get enough in their diet. Wish you the best finding this so
she'll feel better!

25) My eleven year old daughter went from  being - as you described -
energetic and upbeat to often moody and lethargic for reasons she could
not explain.  She would become hysterically tearful over slight things -
in  her case it was hormonal - the onset of  puberty.  Things improved
somewhat when she turned twelve.   You might want to track these
episodes on a calendar to see if they correlate to a monthly cycle.
Hope  things improve for her soon, lynn

26)WHAT DOES HER LABS SAY?
LILY

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