Does Anyone Know

[floridanative]

I posted my Celiac panel results on Random Guys topic with his results. I was just wondering if anyone knows what else would cause a tTg level to show positive besides celiac disease? I know I read someone on this forum that that test is 92% accurate for celiac disease buy my test has an asterisk under it saying this test is 99% specific to gluten sensitive neuropathy. Is it 92% or 99% and in any case, what is the other 1 or 8% indicative of? Nurse only faxed over results page from LabCorp and the doctor didnt' bother to call me to discuss. Any ideas...anyone?

[KaitiUSA]

The tTG is a very accurate test for celiac but there are other things such as Crohns and IBD that have shown to also have elevated tTG levels.

However, some doctors are using this test in place of biopsies for diagnosis of celiac(some do require a biopsy for diagnosis though)

A test I see they didn't have run on you is the EMA which is another pretty accurate test.

Also, have you considered getting a gene test done?

[floridanative]

Well Katie actually the doctor told me he was ording a full Celiac panel including the EMA so I have no idea why it isn't on my results page. If no one calls me to discuss in the next week, I'm going to get the biopsy done elsewhere. This is ridiculous!!!! And thanks for your post!

[Random Guy]

florida, why wait for them to call you? put your dr's number on your speeddial and call them.

ask them why you didn't get all of the results for the tests ordered.

never wait for them to call you.

of course, some doctors (including my endo) are onto this, and never ever answer their phones, instead forcing you to leave voicemails. that makes it harder to bug them. yet not impossible.

call for your answers

good luck

-rg

[Nantzie]

My stepmom is the queen of getting this kind of noncommunication taken care of. The first thing she does of course is the standard phone tag for a few days or a week, depending on how urgent the situation is. But if that goes on to the point where it's completely unprofessional or seriously inconsiderate, and she knows they're either blowing her off or avoiding her, this is what she'll do --

She starts sending VERY polite and professional faxes. That way, they have a piece of paper that they have to find a place for. She'll start out with one or two faxes a day, but will go up to several a day if she still hasn't gotten a response. I think I remember her sending one fax every hour at one point for something having to do with her job. Usually they get so tired of the constant faxes that they call her just to stop the faxes from coming. That usually does the trick.

Nancy

[jerseyangel]

Nantzie--Your stepmom sounds like a smart cookie!

I got the runaround trying to get my biopsy results, too. They told me "if you don't hear in 5 days, call the office." 5 days go by, I call. The Dr. was not in so they couldn't give me the results. This went on and on--he was never there when I called. Or was he? What do they have to gain by not speaking to us? Do they not think that when we have a test for a serious health condition that we aren't anxious ?

[floridanative]

Excellent idea about the faxes. I did call the dr. as soon as the fax came over with the results. No one called me back. I'm going to fax them tomorrow morning and be very nice, explaining that I need someone to call and dicuss the results with me and by the way, why didn't they do the EMA test - or did they just forget to fax that part?

I not having the biopsy done with this doctor now. He's a hemotologist anyway but his office has GI's so one of them would perform the test. But I don't think they deserve my $250 or the rest of the money from my insurance company if this is how they treat their patients. I'm trying to get into a GI that someone on this board recommeded for the biopsy and/or more blood tests if needed. No reason to keep going to someone who told me that they didn't dx people with celiac disease based on one positive biopsy anyway, since the diet is so hard to follow. Yep - that's what he said. I almost fell out of my chair. That was before he said some women get anemia, it will go away after menopause. In other words, wait 10-15 years, you'll feel better then. NO THANKS!

Thanks for all the good ideas/feedback and Happy Turkey Day!

[floridanative]

Nantzie - I'm happy to report that the fax idea worked for me. I sent one fax at 10 a.m. yesterday and the Dr. called me at 4 p.m. He said that my test Celiac blood test results were 'inconclusive' but that in his opinion he doesn't think I have celiac disease. He said also that he'd prove it with the biopsy. Little does he know that I'm having the biopsy done elsewhere since he thinks women 'just get anemia'. When I asked what would cause my antibody level to be high (flagged on the test as 99% to gluten sensitive enteropathy), he said again, your tests were inconclusive. When I aksed why the EMA test wasn't done (said during consult he was doing it) he just said I didn't need that test. Excuse me??!!! I didn't feel like pressing him since I know he doesn't know what he's talking about and I'll never see him again.

[Nantzie]

Yay! I'm glad the fax worked for you. It's always effective.

Nancy

[lizzy]

hey all i now how yo feel i had a full celiac panel done in october and when i called for the results the nurse who was a stand in said she didnt know how to read them i told her to fax me them .she said she couldnt do that i would need to go through medical records and so she said that she would get the doc to look them over and read them to me , am still waiting so after that i called medical recordes they faxed me a sign of consent to release info to me but wont fax the report to me will only mail it which according to them will take two weeks and i need to pay 5 dollars also. so am still waiting, i dont understand they problem arnt any of these doctors patients them selfs and want to know stright away . they need to be sat in our shoes ,

[eeyor-fan]

I posted my Celiac panel results on Random Guys topic with his results. I was just wondering if anyone knows what else would cause a tTg level to show positive besides celiac disease? I know I read someone on this forum that that test is 92% accurate for celiac disease buy my test has an asterisk under it saying this test is 99% specific to gluten sensitive neuropathy. Is it 92% or 99% and in any case, what is the other 1 or 8% indicative of? Nurse only faxed over results page from LabCorp and the doctor didnt' bother to call me to discuss. Any ideas...anyone?

If they have ruled out Celiac, other illnesses that show high are Systemic Lupus, and RH. I was coming back borderline for everything(except Celiac which was always a strong positive) and had to be sent to a specialist for dozens of indepth tests before they ruled out everything except Celiac. I was recently also tested for Sjogrens and am waiting for those results.

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