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

Alison's right about many things.  But, I don't think anyone meant that an
"official" CD diagnosis with positive blood tests & biopsy results wasn't
desireable, but simply not possible for many people for a variety of reasons
I will not discuss here.  IMHO, the lack of an "official CD diagnosis"
shouldn't stop anyone from confidently listing celiac disease on their
medical health history, especially since some doctors believe celiac disease
is any form of permanent gluten sensitivity regardless of lab or biopsy
results.

Most facilities such as hospitals, day care centers, nursing homes, doctor's
offices, etc. don't require documented proof that you are celiac, have
arthritis, hypothyroid disease or anything else to treat you appropriately.
That's been my personal experience as well as my experience working as an RN
in doctor's offices, hospitals & nursing homes for the past 12 years.  When
a new patient is admitted, they or their family supply the health history
which is duly noted in their chart.  If they look at past medical records at
all, it's usually to check for treatment guidelines such as medication
dosages.  No doctor requires the original documentation of osteoarthritis or
diabetes, or hypothyroidism to continue care.  If you say you've been on
insulin for diabetes, blood pressure meds for HTN, or the gluten free diet
for celiac disease for "X"  number of years, that's generally accepted w/o
anyone asking for "official proof" of the diagnosis.  While it may be true
that you might not get insurance reimbursement for dietary services for CD
if you don't have the official CD diagnosis under your belt, I believe most
people who are savvy enough to self diagnose celiac disease & follow the
diet probably don't need dietary services anyway!

I'd advise any gluten sensitive individual or parent/care-giver of a gluten
sensitive person who is transferring care to a new doctor, health care
facility or day care to list celiac disease as a diagnosis & leave it at
that.  Does anyone think that a 60 old celiac would be required to document
proof of a diagnosis that was made 40 years ago?  Of course not.  Medical
records aren't usually even available for that long.  If you state "gluten
intolerant" on your health history, this will not only confuse your care
givers, but cause them to question the credibility of the diagnosis, etc.
That's exactly what happened to me when I went to see a couple of
specialists about issues not directly to celiac disease.  These were not
good encounters.  But, when I've seen specialists & simply listed celiac
disease on my health history without confusing the issue with other terms
such as gluten sensitive, etc., I was treated with more respect.

Since more & more physicians now days are beginning to accept the diagnosis
of celiac disease based upon symptoms & the response to the GF diet w/o the
need for positive biopsy & blood work, I don't believe anyone self diagnosed
celiac should feel they are lying to simply list celiac disease on their
health history.  What many non-medical people don't realize is that
"official diagnoses" are nothing more than a consensus of doctor's opinions.
  When you get down to brass tacks, doctors are only "practicing medicine"
and one doctor's opinion isn't necessarily more valuable or true than
another's opinion.  Doctors have the legal aurhority to diagnose disease
regardless of what the consensus opinion is.  Most medical insurance
providors simply accept the opinions that are agreed upon by the greatest
number of doctors.  But some insurance companies recognize & accept the
diagnoses of any MD or DO as "official" simply because they are medical
doctors with the legal athority to diagnose & treat diseases.  There's
really no official, one true, absolute and eternal divinely appointed
aurhority on any one disease.  Medical terms for diseases are just tools
physician use to communicate with one another.  Once a doctor hears the term
osteoarthritis, he knows what that describes & how to treat it.  When he
hears the term, celiac disease or Graves disease, he knows what that
describes & how to treat it.  Medical diagnoses are not absolute truths, but
only discriptive terms to aid in continuity of care.  And these descriptive
terms often change over the years as new information and research becomes
available.  So, if you are a self diagnosed celiac, take confidence in that
knowledge & use the term "celiac disease" to help yourself receive the best
health care you can.

I need to clarify here that I'm not advising people to self diagnose a
variety of diseases, transfer care & try to get new doctors to treat them
for that.  That would be insane becasue you could cause yourself serious
harm.  Besides, no doctor in his right mind would treat a serious disease
with potent drugs w/o solid evidence of the disease to back him up.  But
with celiac disease which is treated with a harmless diet that you you are
your loved one desparately needs, go for it!

I also want to clarify that the CD like symptoms can be the result of other
disease conditions.  So if you continue to have symptoms of CD even after
being on the GF diet, you should seek medical attention to either get
treatment for or rule out these other conditions.

Valerie in Tacoma

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