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Hi, my name is Sylvia and I am new to this list.  My 15 year old
daughter has just been diagnosed as having a gluten intolerance
(confirmed by pathology tests) but does not have CD.

All this food allergy business is a strange new world to me, and that is
why Lori's post has struck a note.  Alana was only diagnosed with the
gluten intolerance last week, and luckily I found this list on the first
day when I went madly searching the internet for some information, as I
live in an area where dieticians are pretty thin on the ground and her
doctor (toxicologist) is 6 hours drive away - we are in Gladstone,
Queensland, Australia and he is in Brisbane, Queensland, Australia.

Just to fill in the picture, she was a normal, healthy child until
August this year when she had a brain seizure (read Grand Mal).  She had
begun to get intermittent migraines two years ago with the onset of
puberty, but I was told by our GP it was due to her hormones kicking in
and I believed the line, as they did occur on a monthly basis.  When her
periods started the migraines stopped so thought no more about it.  Then
in February this year she complained of experiencing a momentary
blindness and then got another migraine.  This occurred twice in all.
Then on the night in question August 15 to be precise, she was in the
shower and gave a guttural sound.  I raced in there and she just got out
that she was seeing flashing lights (an aura) then had the seizure.
Paramedics revived her and rushed her to our local hospital.  Recovered,
huge migraine, and the diagnosis was "just a migraine".

I kicked up a stink and had a CAT Scan done, as a healthy child who
never even had a cold in her life does not suddenly have a seizure.
Anyway the CAT scan came back normal, so I kicked up a further stink and
an EEG was done which also came back normal.  So, we were told as it
wasn't a stroke or epilepsy, it had to be just a monster migraine.

Alana had sworn all along that it was some bought chicken rissoles that
we had had for tea the night of her seizure that made her ill, and, on
investigation I found out that one of the ingredients in them was
metabisulphate.  So I hunted down a doctor who specialised in
environmental medicine, and found one in Brisbane.  Off we went and she
had an arsenal of allergy tests done, and blood tests.

In addition to multiple food allergies ( all dairy products, many
fruits, vegetables, herbs and spices, and many alcoholic and soft
drinks) she is also allergic to MSG, metabisulphate, propionic acid,
toluene, organo chlorine pesticide, organophosphate pesticide,
pyrethroid pesticide, trichlorethylene, styrene, tetrachlorethylene,
pthalate, formalin, phenol, titanium, and sodium nitrate.  Also house
dust mite, house dust, cat, mould mix B, horse, and dog.

The doctor put her on Vitamin B modified (it comes as a clear liquid),
evening primrose oil, selenium, and absorbic acid (not vitamin C).

Home we came, and her Dad and I got stuck in and cleaned her room out
from top to bottom, scrubbing everything in sight, and banished the dog
to the yard.  Included in our great scrub up was her evaporative cooler.
 This was October 26 (as you can see we had not mucked around or wasted
time).  Went to bed that night and the next thing I know she was waking
me up and telling me that the lights( aura) wouldn't go away.  I kept
holding her to comfort her and tried to get her to lie down but she
wouldn't, and then she had another seizure.  Paramedics and the whole
hospital route again.  When she came too, she told us that when she
switched on her cooler, she copped a big blast of dusty bits in her face
(in our scrub up, we must have forced some dust particles to cohere and
get forced out of our cleaning reach) and she reckoned that was the
cause.

Anway, the hospital stuck to its migraine diagnosis but arranged for her
to see a neurologist (again in Brisbane but not till February next year

- you would not believe that state of the public and private health
system in Australia) and started her on Carbarmazepene to stop the
seizures until she has an MRI scan.

Then Tuesday last week we finally got the results of the last of the
blood tests that were done in October and had to go to Sydney for
analysis, and had the diagnosis of gluten intolerant lumped on top of
everything else.

I personally, am sticking with the toxicologist's diagnosis.  The way he
put it to us was that she has gone along merrily for nearly 15 years,
and had, as luck would have it, not eaten many of the foods she is
allergic to as she just didn't like them.  But, over the years there has
been a gradual build up of toxins in her system and her system went into
overload, hence the seizures.

It will be interesting to see what the MRI scan shows and what the
neurologist says, but, in the meantime, we are having one hell of a
bumpy ride here, especially with Christmas around the corner.

Not to evince sympathy or anything, but to give you an idea of how
isolated we feel in dealing with this, just to get her vitamins and
selenium, we have to have them airfreighted to us every three weeks from
a pharmacist in Brisbane.  On a positive note, we were able to obtain
for her GF eucharist hosts for Mass immediately from a celiac support
group in Brisbane.

I just do not want anyone to be complacent about these food or other
allergies.  Like Alana, nothing might show up for years, and then, BANG,
two brain seizures.

If anyone else is on this list in Queensland, I would be happy to pass
on the name of the toxicologist we took her to.  He was a real
lifesaver.

Regards,
Sylvia