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Subject:
From:
Kathy Burke <[log in to unmask]>
Date:
Thu, 29 Apr 1999 22:38:28 -0700
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<<Disclaimer: Verify this information before applying it to your situation.>>

Listmembers-

I recently requested copies of doctor's letters confirming the diagnosis of
CD.  The reasons some folks gave for wanting or having a letter from their
doctor were:  For tax purposes; verifying the CD diagnosis for future
doctors one may see; verification of diet for travel plans; reaffirmation of
CD in case one gets to feeling really, thinks they maybe don't have the
disease, and that they can go off the diet; and for a company's flexible
benefit plan, expense reimbursement.  When one person went to a new doctor,
the doctor wanted his records from his previous doctor before he would
believe he actually had CD (sad but true).  One person also suggested
getting a copy of the biopsy as well.

Three folks did their own.  These were:
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I wrote my own letter, had the doctor sign it, put his business card on it,
and made copies using the following:

"This is to certify that this patient, ___________, has Celiac disease.
It's major treatment at this time is a special diet.  This diet must be
followed strictly. It is a diet for life."
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Because I wanted such a letter at one point - I wrote it myself and got
my doctor to sign it. She was happy to sign -and I had no problem with it.
It may be better though to have it on the doctor's letterhead stationary.
Mine is not.  My letter was for going on a cruise-so it was primarily to
spell out what I could eat and what I could not eat. If the letter is for
insurance purposes or something like that, you would want a different
letter than what I wrote. Here is the text of what I wrote:

To whom it may concern:

My patient, ________________, has a condition called Celiac Sprue or
Celiac Disease. This is an intolerance to a protein (gluten) in the grains
wheat, oats, rye, and barley. Below is a list of foods she must avoid.

Forbidden:

Breads, Pasta (except rice noodles), Pizza dough, Crackers, Pretzels, Cakes,
Cookies, Pastries, Beer, Soy sauce (unless gluten free), Soups and sauces
thickened with flour (corn starch is OK), Soups, sauces, and marinades
flavored with soy sauce (unless soy sauce is gluten free), Foods containing
hydrolyzed vegetable protein or modified food starch (unless specified to be
from corn or soy)

Note that I did not include grain-distilled vinegars or grain-distilled
alcohols on my list because these do not seem to bother me.
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Your letter should state that you have celiac sprue disease and that you
must follow a gluten free diet and take special supplements to gain and
maintain a healthy digestive system.  Make copies....one to keep on you and
another to send in with your taxes.  You are entitled to take off the
difference between reg. food and gf food.  So, if a lb of flour costs 50
cents, but gf flour costs 3.50, then 3 dollars is tax deductible.  SAVE
RECEIPTS.
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And one direct from a doctor:

TO WHOM IT MAY CONCERN
______________ is a ___ year old ____ with chronic diarrhea and short
stature. Evaluation of his symptoms revealed a positive screening blood test
for Celiac disease. An intestinal biopsy confirmed the diagnosis of Celiac
disease. Patient was placed on gluten free diet and multivitamin
supplements. His/her parents are instructed to keep ____________ on this
diet for life time.

Celiac disease is an immune mediated disease with gluten intolerance.
Patients with Celiac disease are unable to tolerate gluten in wheat, oats,
barley and rye or any other foods made with these grains. As a result, these
patients experience malabsorption of nutrients. The main symptoms are weight
loss, poor growth, diarrhea, anemia and fatigue. Blood tests are positive
for malabsorption and the diagnosis is confirmed by an intestinal biopsy.
Removing all the gluten containing foods from the diet allows the small
intestine to repair most of the damage. Untreated Celiac disease may result
in severe dehydration, malnutrition and growth failure. Small bowel lymphoma
is a well known complication of long standing Celiac disease.
Therefore, __________ needs to be followed closely in Gastroenterology
clinic for assessment of growth and nutritional status. He will need a
repeat small bowel biopsy (At some point, on the restricted diet) to
demonstrate regeneration and recovery of the intestinal villi from the
disease. It is extremely important for __________ to stay on the special
gluten-free diet for his well being the rest of his life. Please do not
hesitate to contact me for any questions.
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Thanks so much for the responses!

Kathy
Oceanside, California

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