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Dr Won't Tell Me Test Results?!?


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9 replies to this topic

#1 smpalesh

 
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Posted 16 October 2012 - 09:33 AM

My dr order a tTG test on September 28. As of Thursday October 11 it wasn't back yet. I called today to ask if the results were back yet and his receptionist was so rude to me and told me that the results are back and everything is fine and the dr would have called me if there was a problem. But I want to know what the actual number was. I paid $65 for the test so I think I deserve to know what the numbers were. She was so rude to me I don't want to call back. :( Should I just trust that it was negative and everything is fine?
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#2 KikiB

 
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Posted 16 October 2012 - 09:36 AM

My dr order a tTG test on September 28. As of Thursday October 11 it wasn't back yet. I called today to ask if the results were back yet and his receptionist was so rude to me and told me that the results are back and everything is fine and the dr would have called me if there was a problem. But I want to know what the actual number was. I paid $65 for the test so I think I deserve to know what the numbers were. She was so rude to me I don't want to call back. :( Should I just trust that it was negative and everything is fine?


Is there someone else you can talk to? I always ask my doctor's office for a copy of the results and have not had a problem getting them.
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#3 tarnalberry

 
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Posted 16 October 2012 - 10:21 AM

Call back, ask them to send you a copy of the results. Period. You have legal right to your medical records.
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#4 ciamarie

 
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Posted 16 October 2012 - 10:29 AM

You might also try email, if you have their website you could use the 'contact' option perhaps, or if you have an email address for them, use that if you don't want to call, asking for the specific test results. Then give it a few hours to see if you get a response. Then email a 2nd request, or call.
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Gluten-free since the end of October 2011

#5 ravenwoodglass

 
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Posted 16 October 2012 - 10:36 AM

Your doctor needs to know about his receptionists rudeness. If you are in the US you have a legal right to copies of all tests. Call back and ask to speak to a nurse and tell the nurse you will be coming in to pick up the results or ask the nurse to make sure they are mailed to you. Do you have an appointment scheduled for follow-up? If you do then talk to your doctor about this incident and if you don't have a follow-up scheduled you may want to make one.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#6 psawyer

 
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Posted 16 October 2012 - 12:08 PM

Call back, ask them to send you a copy of the results. Period. You have legal right to your medical records.

Actually, this is not so clear in Ontario. The doctor who ordered the test owns the results. I have never had a problem getting actual specifics, but it isn't clear that I have a legal right.
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Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

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#7 smpalesh

 
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Posted 16 October 2012 - 12:41 PM

My husband picked up a copy of the results and it is definitely negative. A positive is greater than 20 and mine was 6. I am actually disappointed. I have all of the symptoms of celiac so I am really shocked. I have a biopsy scheduled but they want to do a colonoscopy at the same time and I am too stressed over that so I am considering cancelling the whole thing. I am feeling very disheartened right now. My husband says just try going gluten-free anyways but I don't want to bother without a real diagnosis. I know myself and there is not way I'll be able stick to it if I know I don't really need to be. Not to mention not having a diagnosis to tell family when they ask why I am not eating gluten.
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#8 bartfull

 
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Posted 16 October 2012 - 12:56 PM

Sometimes there are false negatives. And sometimes folks have non-celiac gluten intolerance. The only diagnosis for that is response to the gluten-free diet. I think it wouldn't hurt you to try going STRICTLY gluten-free for a couple of months. If your symptoms improve, you will know you either have celiac or intolerance.

And if you have trouble with your family, send them here to read about it, or get them some info from other reputable sources. BOTH of these conditions are very real, and it would be a shame for you to remain sick and possibly get even worse just because your family didn't believe you.
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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#9 mushroom

 
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Posted 16 October 2012 - 01:10 PM

You can print out the page at this weblink:

http://www.celiaccen...-and-diagnosis/

This is where Dr. Alessio Fasano, the "God" of celiac, discusses non-celiac gluten sensitivity. :)
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#10 GottaSki

 
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Posted 16 October 2012 - 01:16 PM

I know you have been through a tough time just getting this doctor to test tTG-IgA and don't wish to make you jump through more hoops. I just want to make sure you understand that one tTG IgA test is not enough to rule out Celiac Disease or NCGI if you have symptoms.

As I see it, you have four choices:

Have your doctor order full celiac blood work - without a Total Serum IgA, the tTG IgA doesn't give a clear picture. The full panel will give you a much better picture.

Have the endoscopy and make sure the doctor takes at least 6 biopsies of the small intestine - the changes in early celiac cannot be detected without these biopsies. I understand the apprehension of going in for a "double-ender" - I was not thrilled with the idea, but I can tell you it is not a difficult procedure and having them both at the same time rules out many causes of your symptoms. I had one double and I do not remember anything about the colonoscopy and had absolutely no memory of anyone even lifting my gown.

Skip any further testing and remove ALL gluten for at least three months to monitor for improvement. If your symptoms improve significantly, perhaps your doctor will diagnose NCGI and you will have an official diagnosis to report to your family.

Do nothing and wait for symptoms to potentially get much worse. Mine did and I'd hate for anyone to get worse when they might already be on the right track to improving their health.

I do hope you are able to find some answers.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)





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