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Summary: "Official Diagnosis" - Better to Have or Not? - Part 1

Thank you all for your responses to my question whether it's better to have
an official diagnosis of Celiac Disease (or Gluten Sensitivity) or not.  I
received many letters, and most of you felt that it is better, for various
reasons, to have the diagnosis.  There were several arguments against getting
any diagnosis recorded in one's medical records, but many more arguments for
doing so.  Read on.

Some comments from the group:

Regarding insurance:

1) "If health insurance companies ask for medical information, and you don't
list CD and they find out you were treated for it, etc. and you didn't
disclose it, that is potentially fraud and all claims would be disallowed.
If you change insurance companies (due to job change), you should be
protected from pre-exclusion clauses" (The writer mentioned a Federal law
passed under Clinton that stated you didn't have to repeat a pre-existing
condition period if you changed health insurance due to a job change.)  Life
insurance would also require disclosure, and failure to disclose could
disallow any claim.  However, if you go without insurance for any period of
time, it could be excluded from coverage for a period of 9 months.

2) "Insurance companies are painfully unaware of celiac.  I once had to jump
through some serious hoops to get my daughter insured, including having to
write an explanation of the disease for the insurance agent."

3) "My daughter was denied life insurance coverage due to celiac
disease.  After 5 months of pressure on the insurance company, they
issued coverage at a standard premium rate.  We didn't take "No" for an
answer, because we knew the company's reasons for denial were wrong.  In
the end, the company changed their policy on how they deal with requests
for life insurance coverage for CD."

4) "Some of us do have trouble getting insurance coverage.  The insurance
companies tend to think of celiac disease as a lifelong problem for which
they are not inclined to grant coverage.  The insurance companies will not
take into consideration that if we stay on the GF diet, we are just as
healthy and in many cases healthier than the general population."


Regarding hospitalization/nursing homes/medicines:

1) "It is important for older people facing hospitalization or nursing home
care to have an officially recognized diagnosis since they will need all the
help they can get making sure their food needs are met.  Hospitals and
nursing homes are the WORST places to be gluten-free."

2) "I'm a nurse.  I specifically remember hearing a family member complain
about a facility that ignored her request to keep her mother dairy-free.
(Her mother got very sick when she drank milk.)  She really suffered from it
her last few years.  Those institutions are basically one-size-fits-none
operations."

3) Doctors will not consider whether gluten is present in medicines they
prescribe if you (or your celiac child) have not had an official diagnosis.

4) "I think an official diagnosis would be helpful if at any time you need to
be hospitalized or in a nursing home.  In both situations you may not be able
to speak for yourself, and there may not be anyone around who can speak for
you.  Nursing staff and dieticians will respect an official diagnosis a lot
more than a family request for a gluten-free diet.  Imagine the horror of
being stuck in a facility with a traditional diet forced upon you.  If
there's nothing 'official' on the books, you just get the 'standard'
treatment for everything, which could be devastating for a celiac."

Regarding the school and teen years:

5) "I would say it is a good thing to have the food problem a part of her
(the celiac child's) record.  It is important for school teachers to have
this information so they can help safeguard her from 'unsafe' treats."

6) "It is much harder to stick to the diet for a lifetime if there is some
question as to the necessity.  In the teen years, symptoms often go away for
a period of time; how likely is she to stay on the diet if she can
legitimately question the diagnosis?"

7) "At some point when your children are teens and have been gluten-free for
a long time, they may try eating something and - no reaction!  Due to their
villi being re-grown/healed.  Then they are going to say they don't think
they have celiac, as they aren't getting sick when they eat the wrong foods.=

My daughter is doing that now!  So I pushed the issue at the doctor's office,
and she had a blood test last week.  Get the diagnosis!"

8) (From a mother whose undiagnosed, but definitely celiac, son is about to
go to college) "So, here we are six years later and he is going off to
college without being able to prove he has celiac and he cannot get his own
apartment.  He cannot eat in the cafeteria.  So we are going to have a blood
test run now with our new doctor.  I would prefer the diagnosis rather than
the stuff we have had to deal with!"


Regarding Other - general

1) "Having (it) on her record should be a non-issue.  If she had a peanut or
penicillin allergy, you wouldn't try to exclude that from her medical
records, would you?  The same is true for celiaca |It's difficult enough to
have our dietary needs respected medically, socially, at work, and otherwise
with an official diagnosis; I am sure it is much worse without one.

2) "With an official diagnosis, there can be tax advantages from the extra
food expense."

3)  "We have access to a medical savings account (pre-tax dollars), and with
a letter from my doctor, I can get reimbursed for the cost of gluten-free
food."

4) "If I were you, I would not even take this information to the doctor
because it will become part of your daughter's permanent medical records.
Why open up this can of worms, when you don't have to?  As far as dealing
with a hospital, you can just tell them that your daughter is intolerant to
gluten and you want her to be served a GF diet only.  Just let them think
that you're peculiar.  It certainly beats risking having your daughter turned
down for insurance the rest of her life."

5)  "I'm glad we have an official diagnosis, because now we know she
(writer's daughter) must remain gluten-free."

6)   "An official diagnosis may add credibility to her circumstances in the
future.

7)  Having an official diagnosis is not giving her a disability.  "It's all
about attitude.  An official diagnosis may eventually lead to benefits.  But
the knowledge and your handling of the condition will provide your daughter
with the greatest benefits."


Thanks again to you all for your input.

Holly in SC