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From:
A Gilliland <[log in to unmask]>
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Date:
Sun, 8 Jun 2003 15:48:32 -0700
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<<Disclaimer: Verify this information before applying it to your situation.>>

Hi All--

I'm sorry it's taken me so long to get a summary
posted. My original query was: does anyone know of any
specific references or websites that indicate celiac
is considered a disability? After research and a call
to the Americans with Disabilities toll-free number,
it seems that celiac disease, in and of itself,
"might" not be considered a disability, but the
medical issues and disorders that stem from having
celiac would qualify one for disability if severe
enough, documented, etc. The Americans with
Disabilities representative told me that it would all
depend on how one's doctor presents the disease and
that new diseases and illnesses are added to the list
of qualifying disabilities each year. I was and am not
attempting to get disability, but was hoping that the
cost of some of my food would have some bearing on
qualifying for food stamps and/or family assistance if
celiac was considered a disability. It didn't.

After thinking about the definition of a disability -
that it must affect a major life activity (loosely
defined) - I considered the amount of time it takes us
to verify our food is gluten free, not just the fact
that eating is a major life activity. Don't know how
this time factor thing to verify gluten status of
food, medication, soaps, personal hygience items, etc.
would play out - it might be a good argument for
better labeling laws, at the very least. It's
definitely life-altering when one tries to work, run a
family and figure out what one can eat, especially
when first diagnosed.

I want to thank everyone who responded and hope that
something in this summary will be beneficial.

_____
...SSDI is updating their criteria for autoimmune
diseases and everything will be changing.  I can't
imagine with the current administration in Washington
that the changes will be favorable.  But is you're
looking for "reasonable accommodation", that should be
easy enough to establish since eating is a major life
activity,especially since the courts have ruled
favorably in the area of reproduction as a major life
activity.  We surely eat more often than we have
kids!!!
_____
Dana Korn's Book for children with CD refers to some
education laws which might help you.
_____
I have looked extensively and what I have found was
rather vague and not accepted relating Celiac Disease
to being a disability to insurance companies.
_____
I tried about a year ago to get SSI for my daughter
with CD and was told that the govt does not consider
CD a disability, I live in PA, don't know if that
makes a difference since its a federal program.  I
tried to argue the case that if they consider PKU a
disability then CD should be too since our kids can
have severe problems if they don't stick to the
diet,and unlike PKU the CD diet has so much gray area
and you can't cheat.  If you have any luck I'd love to
know.  I was trying to get medical assistance through
PA which has a wonderful program but you have to apply
through Social Security first and have it declared a
disability.
_____
...check the "Americans with diabilites act"....it's
listed there
_____
My daughter's gastroenterologist wrote a letter
stating that it was a medical necessity for my
daughter to be on a gluten free diet.  She had
to document the difference in cost of bread, pasta and
other things that she would normally eat in a month.
She was then allowed a percentage of the
difference for food assistance.  This may or may not
help in your circumstance.
_____
I don't think that celiac disease would be considered
a diabilitliy, but the consequences of
celiac--osteoporosis, fatigue from chronic anemia,
persistent GI distress, that do not resolve because
one has suffered irreversible damage.

If diagnosed early, recovery should be complete with
no ongoing health problems as long as diet continues
to be followed.  Unfortunately, not everyone is
diagnosed at that point.
_____
I am a biopsy diagnosed celiac.  I qualified for
disability about 4 years ago.  I was initially denied
when I first applied.  I appealed the claim several
times.  I was finally successfull after obtaining the
services of a lawyer who specialized in disability
claims.  He approached it from the view point that I
had multiple diagnoses including CIDP, (chronic
inflammatory demyelinaitng polyneuropathy---a
neurologic disorder).

The group that reviewed the claim included a GI doctor
who was in fact "somewhat" familiar with the
disease---Celiac.   It seems that her beloved cat,
that had been at deaths door had recently been
diagnosed with Celiac Disease.  The cat was placed on
a gf diet and made a speedy, full recovery back to her
old playful self.  Therefore the doctor believed every
word that the lawyer told them about how debiliting
and limiting the disease (CD); including the
importance of a gluten-free diet and the result of
multiple complications if this diet was not adheared
to.
_____

Cheers,
Ayn in Alabama

















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