<<Disclaimer: Verify this information before applying it to your situation.>>

During the past few months, my able-to-consume-gluten husband has been
through two  surgeries, anesthaesized three times and been hospitalized the
same number of times.  I've been on the oposite side of the hospital bed
this time and it really helped me to see the night-and-day difference in
the medical care he is able to receive. . .  and my own.

He didn't need to spend time explaining to a specialist who had never seen
him before just what celiac sprue is.  And how deadly it can be.  (We have
written to the list before about my extreme sensitivities and my tendency
to anaphalatic  shock responses as well as convulsions.)  He didn't need to
quiz the anaesthesiologist.  In the E.R. they were about to inject several
different pain meds and give him medication for severe nausea without
having to wonder if the cure would be more deadly than the cause.  Need a
pill????  Here it is.

Last week I sat with a bottle of medication in front of me that I was
literally afraid to take.  But needed to.

Stokes Pharmacy's book had green-lighted it.  A call to the manufacturer
assured us that potato starch and corn starch were used.  Then my husband
asked about cross-contamination.  The rep had never been asked that before.
She didn't know.  She'd have to make inquiries and get back with us.  A
call later that night told us she still didn't know.  She'd get back with
us on Monday.  That was Friday.  I had to put off the medication for a day
already to contact the company.  I needed the med.  Did I take the chance?
Dare I not?  My condition was worsening and I *needed* that med.

Feeling like I was playing Russian Roulette, I swallowed the pill.  And
waited.  My throat felt ok.  I checked my tongue.  No swelling.  I sat with
epipen and Waldryl at hand.  Five minutes.  Ten minutes.  I was ok.  Ok,
but mad that I had to put myself through this.  I found myself cursing drug
companies that will not put themselves on the line for their product.
Three of the decongestants in Stokes book could not be verfied as gluten
free.  No guarantees.  And I *need* guarantees.

More and more we have run in to this.  Some companies have been wonderful.
One company assured us that all their meds were gluten free.  So why can't
this simple information be placed on a label????  Just two words could save
my life someday.  Gluten free.

What happens if I am in a car crash and need emergency care and no one is
there to speak for me.  What happens if the E.R. doctor has no clue about
celiac.  (Our typical experience.)

I'm mad that I can't get the same quality of medical care as my husband.
That a hospiatal can be as deadly as the need to go there.

Don't drug companies know????

Don't drug companies care???

If I need a med outside of 9:00 am to 5:00 pm eastern time, Monday through
Friday, there is no way for me to be assured that the information about the
med is accurate.  Is there information accurate???  Do they know that
flavors and coatings and  processes can contain gluten?  Ingredients don't
tell the whole story.  (I recently had a rep tell me that "if a product
doesn't say "Gluten"  in the ingredient list it is *obviously* gluten free).

Yeah.

Right.

Can we as a growing list *do* something about this????

(translation:  I'm mad as hell and I'm not gonna take it anymore.)

But they won't do it just for me.

Are there enough of you out there that have reactions severe enough that
this is something you'd fight for?

Who do you barrage?

Who decides anyway????

I'd like to be innundated with emails that have suggestions and support.

Whew.

(deni steps climbs down from her soap box.)

I'm  tired of not knowing.

Anybody else????


--------------------------------------------------------------------------------
[log in to unmask]

It is seldom wise to leave a live dragon out of your calculations if you
happen to live near one.