How Definitive Is The Blood Test?
Posted 11 July 2011 - 09:17 AM
Posted 11 July 2011 - 11:10 AM
Posted 11 July 2011 - 03:12 PM
What exactly does the blood test do? Just say, "yes, you have the gene for it", or actually say, "yes, you definitely have celiac disease"? Any advice?
I think you are confusing the genetic test with the antibody test.
The genetic test just shows whether you have a gene that predisposes you to develop celiac disease -- it does not diagnose it.
The celiac panel is a test involving four or five different blood tests specifically testing for celiac disease. A positive on any one of these tests is considered to be diagnostic of celiac, although many doctors want to do the endoscopy with biopsy for confirmation of damage to the small intestine, which is the current definition of celiac disease. However, there are other forms of gluten sensitivity which do not test positive on the celiac panel, but nevertheless cause as much damage as (or maybe more than) celiac itself. Some people refer to these as false negatives (a rate of about 20-30%); false positives hardly ever happen.
"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein
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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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Posted 11 July 2011 - 05:16 PM
Posted 11 July 2011 - 07:22 PM
My dr is a different one from DD but in the same office. I will get my test results for myself back on thursday. The dr said that yes, my DD definitely has celiac disease, but that she is not as sensitive to gluten as those with higher numbers, and therefore won't have to be as careful about contamination. Does that sound right?
I'm so sorry to say that the doctor you saw is completely and utterly ignorant about celiac disease. I will restrain myself from saying more out of a desire to avoid using curse words.
Low numbers do not mean that she is less sensitive. Honestly, doctors are only now realizing that a negative biopsy can still be celiac disease - they don't know enough to know WHAT low numbers mean. My daughter had higher numbers on some tests than I did, and lower numbers on others...what does that mean, if lower tests is less sensitive?
But, as an example...low numbers could mean she's only been reacting to gluten recently, or that she was reacting at low levels for a long time and is slowly increasing only recently, or that she's been reacting like crazy for a long time, and her vitamin levels are so low that her auto-immune system can hardly function any longer and can't even PRODUCE high levels of antibodies at this point (I have heard a doctor say that he believed this does happen, because he had patients who would test very low, but then he'd have them go gluten free, heal a bit, and then try a gluten challenge. Their numbers would be sky high the second time around).
So...yeah, he's clueless.
The celiac group sounds like a good idea. From what I've experienced, celiacs in the trenches, so to speak, are often more up to date on research and information about the disease than doctors are, unless the docs are celiac experts. And there ain't a lot of the latter around.
But considering that this doctor just advised you to do something that would seriously harm your daughter, I'd make sure never to see him again re: her health. Ever. You'll never be able to trust what he says.
Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease
23 years with undiagnosed sulfite sensitivity
25 years with undiagnosed mast cell activation disorder (MCAD)
Daughter: celiac and MCAD positive
Son: gluten intolerant
Father, brother: celiac positive
Posted 13 July 2011 - 04:21 AM
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease
celiac disease(positive IgA tTG, no biopsy- 11/2010)
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.
Posted 13 July 2011 - 06:18 AM
Posted 16 July 2011 - 10:29 PM
Son1-lifelong diarrhea and generally unwell. Diagnosed March 2010 with positive blood work end endoscopy-finally feeling better August 2011
Son2-Diagnosed August2011 Bloodwork only.
Me-Positive bloodwork October 2011, Endoscopy booked November 15th.
Daughter1-no symptoms, negative bloodwork twice
Daugher 2- no symptoms, no bloodwork yet.
Posted 17 July 2011 - 01:12 AM
Endomysial IgA is completely specific for celiac disease, and the positive TTG confirms that it wasn't an incorrect result. There are medical articles saying that people with positive endomysial don't need the biopsy to confirm celiac. The advantage to getting one is that you know her baseline.
Ok, I got more info from my dr appt today. I asked for a copy of my DD test results and the endomysial antibody IgA was positive. The tTG was 55 (I was told normal range was 0-3). The immunoglobulin A, Qn Serum was 151 (normal is 61-348) so that one is normal. Those were the only 3 tests done in the panel. My dr is a different one from DD but in the same office. I will get my test results for myself back on thursday. The dr said that yes, my DD definitely has celiac disease, but that she is not as sensitive to gluten as those with higher numbers, and therefore won't have to be as careful about contamination. Does that sound right? This is all so new to me and I keep hearing differing opinions from people. How do I know who is right? I am going to attend a support group meeting tmw night and hopefully get more answers.
TTG numbers are not at all correlated with celiac disease severity or the degree of gluten sensitivity. Your and your DD need to work together to figure out how sensitive she is, and it may change from year to year. The safest thing is to assume she is pretty sensitive and work from there.
Posted 20 July 2011 - 07:24 AM
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