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Dear Group,

I've become so sensitive to gluten that I can only eat food prepared and
served on dishes from a totally GF kitchen--like mine.  I can't even go to a
friend's house and eat food I've brought if I use their dishes.  Is anyone
else this sensitive?

I'm not a newcomer to GF.  About 5 years ago, I noticed I was having GI
reactions to wheat--cramps and the runs.  I turned out negative on the
bloodwork but positive for gluten sensitivity with Enterolab's test.  Since
then I've been GF with increasing care.  Since I was only "sensitive" I
wasn't all that careful at first but my reactions worsened.  Then about a
year ago I began having flu-like symptoms after getting glutinized in
restaurants: in addition to the usual GI symptoms, I would get the chills,
shakes, sweats and extreme fatigue, especially in the mornings, and feel
like #%$! for two or three days.  Eventually I had to avoid restaurants
altogether--even those with GF menus.  More recently, I started
becoming sick on GF food eaten at friends' and relatives' homes.  So I began
taking my own food but had to avoid using their dishes or I would become
sick.  At Thanksgiving, I made a totally GF meal at home but there must have
been cross contamination somewhere because I had a reaction.

I only buy prepared food marked "gluten free."  I've purged the house of all
gluten containing items, including cosmetics and hair products.   Even the
bird is on a GF diet.  I feel like any amount of gluten over zero parts per
million will cause a reaction.  I've been spending an extraordinary amount
of time feeling awful.

I was urged to go to a gastroenterologist to make sure this wasn't something
else.  Since I've had no positive bloodwork or biopsy, the doctor I saw (who
holds himself out as knowing something about CD) said that nothing I told
him convinced him I have celiac disease (I've also had reactions to barley
and rye) and he said I should go home and eat gluten for a month and come
back and get tested.  I'm not sure that I impressed upon him just how ill
I've been getting on microscopic amounts of gluten because I think I'd end
up in the hospital after about a day.  I had bloodwork again which was
negative (no surprise) and the gene test which is yet to come back (of
course, I'm sure it's positive although I know that's not conclusive for
CD).  I'm not sure what we do from here although I'm sure I don't want to
make myself sick to prove to him I have CD.

In the meantime, I'd love to hear from anyone who can shed some light on
this or is as sensitive as I am.  What happens from here?  I can't get any
more sensitive.  Am I going refractory? I know several people with CD and
none of them have problems like this.  It can be a little bit bewildering
and isolating.  Thanks for your help!

Thanks!!
Rosemary

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