Dr Won't Tell Me Test Results?!?
Posted 16 October 2012 - 09:33 AM
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.
Posted 16 October 2012 - 10:21 AM
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
Posted 16 October 2012 - 10:29 AM
Posted 16 October 2012 - 10:36 AM
"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)
Posted 16 October 2012 - 12:08 PM
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.
Call back, ask them to send you a copy of the results. Period. You have legal right to your medical records.
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)
Celiac.com - Celiac Disease Board Moderator
Posted 16 October 2012 - 12:41 PM
Posted 16 October 2012 - 12:56 PM
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.
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!
Posted 16 October 2012 - 01:10 PM
This is where Dr. Alessio Fasano, the "God" of celiac, discusses non-celiac gluten sensitivity.
"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
Celiac.com - Celiac Disease Board Moderator
Posted 16 October 2012 - 01:16 PM
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.
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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