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Karagirl
Hello...
I've been gluten free for 4 years, it has changed my life. I live in a new place, so new doc. This doc wants to re-order all tests and another biopsy as he suspects IBS instead. (I found out the medication I was taking contained wheat starch and I had this one really terrible episode of diarrhea and abdominal pain in November. Pharmacy said, it was gluten free-manufacturer of drug said it did have wheat...so I was taking it for 2 weeks as I got sicker and sicker) Forget the fact that I have lived with this disease and biopsy 4 years ago showed celiac. He ordered the blood work, I asked if I had to eat wheat-and was told no. I've just cancelled all my tests, biopsy...this is nuts...I'm not asking him for a second opinion on a proven diagnosis.

Is there a sight with lab protocol I could copy to educate this doctor? I'm not going back to him, but I also want to write a nice letter explaining why I am confident he is not the doctor for me.

Thank you!
happygirl
From Dr. Peter Green of Columbia University's Celiac Disease Center:
http://www.celiacdiseasecenter.columbia.ed...nts/A02-FAQ.htm
"A gluten-free diet should not be started until all diagnostic tests are completed, as the withdrawal of gluten can change test results."
This is also re-iterated in his book, Celiac Disease: A Hidden Epidemic

From the National Foundation for Celiac Awareness:
http://www.celiaccentral.org/What_is_Celiac_/Diagnosis/435/
"It is important to continue eating a normal, gluten-containing diet before being tested for celiac."

From the National Institute of Health's consensus statement on Celiac Disease, 2004
http://consensus.nih.gov/2004/2004CeliacDisease118html.htm
"All diagnostic tests need to be performed while the patient is on a gluten-containing diet."

Celiac Disease Foundation
http://www.celiac.org/celiac disease-diagnosis.php
"A person seeking preliminary diagnosis of celiac disease must be consuming gluten."



loco_ladi
Personally I dont think I would be as nice as you and want to explain to him why... nicely. I do believe he would have heard my thoughts on the matter right after he opened his mouth and all the bull flew out (lol)

But then again I have had my fair share of foolish male doctors tell me I am wrong, granted sometimes I am but that doesn't give them any right to ignore what I think. I now take my own health into my own hands and have found I do a pretty good job and have now found at least 1 doctor who listens objectivly and conciders my opinion and research... to bad I am going to loose them soon (sigh) oh well off to the yellow pages for interviews.
kbtoyssni
Yeah, I don't think I would have been so nice, either smile.gif Why the heck does he want to re-prove you have celiac? You had a positive biopsy four years ago - that's the current medical "golden" standard - what more does he want??? And say he changes your diagnosis to IBS. Where does that leave you? Probably taking drugs and not feeling that much better. I'm strongly on the side of IBS being a description of symptoms, not a cause of symptoms, and, yes, many celiacs display IBS symptoms. Good for you not going back to him, and for trying to educate him on your way out. It's obvious this guy doesn't know much about the disease.
Karagirl
Wow...thank you for the excellent links, for the words of encouragement and the support. I have been so angry about this doctor visit. And I've had enough of doctors right now... UGH.
tarnalberry
I'd look at him and say "Uh, you're testing me for ANTIBODIES. How am I supposed to have ANTIBODIES if I don't have the thing that causes them to be produced in my system?! This isn't like TB, where you produce antibodies forever and ever."
GlutenWrangler
I'd tell him to go back to medical school because he obviously didn't learn anything the first time around.
nora_n
Here are some university lectures for your doctor about celiac diesase, over one hour, on youtube
http://www.youtube.com/watch?v=QR2LvQmoF1Y&NR=1
found at the delphi celiac forum.
nora
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