<<Disclaimer: Verify this information before applying it to your situation.>>
I would like to thank each one of you who took the time to offer your experience and encouragement. I appreciate each email and read each of the 73 (so far) responses. I want to extend my sympathies to all of you who have had similar trials.
I gathered some statistics and pasted some edited emails (6) that I thought might be of interest to the list.
I have read the AFP article and it is very concise. I did bring it with me to my appointment, but did not leave it, as I felt it would not be looked at. I will bring it to the dr's attention directly.
I called my insurance provider today as many of you suggested, and they said, "No problem. Just have the doctor order it."
a.. Many suggested getting a new doctor,
b.. 48 responses were for testing (with good reasons),
c.. 14 emails were not for testing, or just indifferent to it (GF is enough)
d.. Two have had success with a Naturopath,
e.. Several have used Enterolab for diagnoses.
f.. Delphi forums is also a good support site for Celiac.
g.. UC Irvine is doing a study for family members diagnosed with Celiac.
For those of you who asked, I only saw the Nurse Practitioner yesterday. I heard her in the next room consulting with the other Nurse Practitioner about me. I have been eliminating familiar sources of gluten for about a month, but cannot say I am completely GF. Noticed a significant difference with the little that I have eliminated.
I do have 4 children, two of whom have decalcified teeth. I am taking one in for check-up on 1/29. This is a doctor who listens but I am so much more "armed with info." Thanks again for all of your advice and support, I feel better already. If anyone wants a complete summary, just ask and I will send in a Word doc (88KB), or a HTML text doc (86KB) or a Zip file.
Respectfully,
Loretta,
Oceanside, CA
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SUMMARY OF EMAILS:
Attached is a list of articles on the WEB that our celiac group distributes to doctors for education.
...it is really easy for the doctor to say "insurance won't cover this" instead of "I am not going to do the test because I do not think you need it". This way you are mad at the insurance company instead of the doctor.
http://www.aafp.org/afp/980301ap/pruessn.html
www.niddk.nih.gov/health/digest/pubs/celiac/index.htm
http://www.celiaccenter.org/Articles/celiacgastro.pdf
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What I finally did was get Dr. Fine's test, See www.finerhealth.com.
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I read about this sure fire way to get them to test
in a book written by Mary Shomon, an advocate for those with
hypothyroidism. Write a letter to your doctor requesting testing for CD and listing all
the symptoms you've had through the years. Then bring two copies with
you to your next office visit. If the doctor refuses to test you, have
him sign the letters. Have one copy put in your chart & you keep the
other copy.
According to Mary Shomon, most doctors are afraid of the legal
repercussions they may face if you are found to have this disease later.
If nothing is written in your chart, you can't prove that you've ever
spoken to your doctor about it & he can simply deny it. If you have a
signed & dated letter in your possession and in your file showing that
he's refused you, he's compelled to order the tests!
You might the specific tests you are requesting in your letter. And, I
think your doctor's nurse is all wet. These are standard lab tests that
any insurance company would pay for.
(1) IgA gliadin (ELISA)
(2) IgG gliadin (ELISA)
(3) IgA endomysium (IFA)
(4) IgA Reticulin (IFA)
(5) tissue transglutaminase (ELISA)
Make sure you've done a sufficient gluten challenge before you take
these blood tests, or else you've wasted your time & money.
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It is a lot easier to tell others that you have
celiac than to tell them you think you have it. Also the diet is easier to
follow when you know that you have it.
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I am a study manager for a celiac study at the University of California,
Irvine. We are looking for families where at least two individuals have
been formally diagnosed with celiac disease. From your e-mail, your family
could be eligible to participate (since you have three cousins, an aunt,
grandmother who may have been formally diagnosed). Once I verify at least
two celiac diagnoses in your family (the two I verify cannot be
parent/child), we will screen all first degree relatives of anyone with
celiac disease for antiendomysial antibodies at no cost.
Please let me know if you would be interested or would like further
information. I can be contacted toll-free at (866)356-9962 or by e-mail:
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Thanks!
Linda Steele
Epidemiology Division
College of Medicine
University of California Irvine
224 Irvine Hall
Irvine, CA 92697-7550
Tel: (949)824-5603
Toll-free (866)356-9962
Fax: (949)824-4773
e-mail: [log in to unmask]
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...website of Enterolab www.enterolab.com, print and read all of their information.
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END OF EMAIL SUMMARY.
* Please remember some posters may be WHEAT-FREE, but not GLUTEN-FREE *
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