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

The situation: I've been gluten free for approximately 15 months.  When I
first decided and brought up the possibility of Celiac to my Drs., it was
nixed as too rare a disease.  Hence, I eliminated the gluten myself.  A
couple months later, and after my pounding the point to them they would only
agree (only test they do) to do a fatty stool test.  They didn't know
anything about the anti-body tests.

Since I'm still having problems I decided to have the anti-body tests done
on a cash basis, at a lab of my choice.  The argument was: The
circumstantial evidence points to a gluten problem.  Since this is a cash
transaction and I'm bypassing all Insurances, it doesn't need anyone's
approval. BTW, I lost my Insurance and I'm on Medicaid -- as anyone knows,
they pay for nothing and do even less.  The Dr. agreed to write the
perscription. Additionally, since I'm doing this on my own, Ophthalmology
suggested it would also be prudent to check for Sjogrens given the excessive
dry eyes, mouth and skin,  and a considerable association to Celiac.  The
ENA I'm having done in December.

Some of the circumstantial evidence:
6 years of perfect thyroid numbers on 450 Mcgs. Of Synthroid. After stopping
all gluten, I became severely overdosed without any change in the dosage.
I'm not taking 350 Mcgs. My take: an absorption problem being caused by the
gluten.  Drs evaluation: co-incidence.

10 years of an elusive Potassium requirement.  When on diuretics, I required
100 MeQ daily to maintain normal levels.  When not taking Diuretics the
requirement remained at 60 MeQ.  After going gluten free, the requirement
dropped to 20 MeQ daily where it remains.  Dr. evaluation: co- incidence.

Additionally, I started taking Mega-doses of vitamins/minerals/sub-elements
with a corresponding massive improvement.  My take: Some form of
malnutrition.  Dr. evaluation: Placebo effect.

I've been totally lactose intolerant for 8 years.  Even 3 percent cottage
cheese gave me massive problems.  I'm now able to eat the 3 percent with no
problems and I've ventured into some cheeses with minimum amounts and
problems. Just some occasional minor flatulence.  A considerable improvement.


I've scheduled the anti-body tests for the 1st part of January 1998.  What
is the absolute minimum time I need to go back on gluten to get a good
reading?  The problem going back on gluten:

I don't get the symptoms that most talk about on the list.  Mine are mostly
Neuro-Muscular that give the appearance of Myasthenia Gravis and Multiple
Sclerosis.  Going back on the gluten starts the reduction to all "pain and
temperature."  I had lost most of it before gluten-free.  I actually
accidentally stuck my hand in a pot of boiling water and never really felt
it. It affects the gait to where I'll be back in the wheelchair most of the
time.  I now can walk about 200-300 feet with a cane.  The arms and legs
would stop working in mid-movement, Stop breathing during the night, short
term memory loss and episodic amnesia, beard stopped growing to the point I
only needed to shave once a week, etc.  This will not be a fun adventure but
a necessary one to either prove Celiac or something else that is causing the
problem with some "strange" association to gluten ingestion.


Dennis
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Web Address Home Page: http://www.gate.net/~imxtc4u

Personal Quote changed:  15 Nov. 1997

Your birth certificate guarantees your death.
It's irrelevant whether it happens 1 minute after birth,
100 years later or any time in between.  The outcome
is predestined and always the same.

                By Dennis J. Tonetti