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cdog7

Negative Blood Test?

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http://www.celiacdiseasecenter.columbia.ed...C05-Testing.htm

You might find this interesting. These blood tests can rule celiac IN but cannot rule it OUT. They are well known not to be 100% reliable.

You can follow-up with an endoscopy/biopsy or confirm by a positive dietary response. And, many people here have had gene testing, which will not confirm Celiac, but can inform you of a predisposition.

Twenty percent of individuals with Celiac will pass it on to first degree relatives.

If you are frustrated with the continued medical dismissal, try the diet and if it works for you...great.


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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Did you get a copy of your bloodtest? Mine was normal too, until I realized that my IgA was seriously low. The normal range began at around 80 MGL, mine was 19. That article posted by Momma Goose shows that a low IgA alone can be a marker for Celiac. So, get your test results if you don't already. Then you can see for yourself the total picture.

As I said, my result was negative. I know better. I know that when I unknowingly ingest a small amount of gluten or am CC'd (which happened to me this past weekend), it makes me overall feel tired, lethargic, just totally out of it. So believe me, you can most definitely be negative blood test and definitely reactive be Celiac. There are sooo many of us on this board.

I am glad to hear though, that you changed doctors. Many of them are truly misinformed.


Be yourself, everyone else is taken.

Oscar Wilde

Gluten free November 2007

IgA Deficient, Neg Bloodwork, Double DQ2 Positive

Dietary and Genetic Diagnosis June 2, 2008

Soy free Jan 09

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http://www.celiacdiseasecenter.columbia.ed...C05-Testing.htm

You might find this interesting. These blood tests can rule celiac IN but cannot rule it OUT. They are well known not to be 100% reliable.

You can follow-up with an endoscopy/biopsy or confirm by a positive dietary response. And, many people here have had gene testing, which will not confirm Celiac, but can inform you of a predisposition.

Twenty percent of individuals with Celiac will pass it on to first degree relatives.

If you are frustrated with the continued medical dismissal, try the diet and if it works for you...great.

That really is interesting. I do know that he just did an antibody test. I didn't have the highest confidence when the nurses performing it had to dig out a giant textbook to figure out what he'd asked them to do. I honestly felt like he was just pandering to me, not really trying to diagnose. I definitely plan to start the diet as soon as I can -- for now just having an occasional day that's gluten-free is nice. Thanks!

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That really is interesting. I do know that he just did an antibody test.

Another interesting thing.... when I had my blood tests done, my antibody levels were highly elevated. Yet, my ALLERGIST told me that there was no way I had Celiac, and that the antibody tests were pointless. (Then....why run them?)

Incidentally, my GI said that elevated antibodies indicates *something* going wrong... regardless as to whether it's true Celiac or not.

WHY, oh WHY can't they all get on the same page?????


Jayhawkmom -

Mom of three....

Jay - 11

Bean - 8

Ian - 3

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Don't rely on those blood tests. You can't even really rely on the endo either, it can be hit and miss and while both tests can say for sure that you have celiac neither can say for sure that you don't. The true test is how you feel on the gluten-free diet. You don't need a doctors permission to eat gluten free. There are gene tests but they also can be problematical because there are only 2 genes that are considered celiac genes in the US. If you have one of the other celiac related genes instead you will be told that you don't have the genes and can not possibly be celiac. Gene testing is in it's infancy and not all the genes related to celiac are recognized as such. My gene for example is considered a RA gene here, which I did have all the symptoms of. However it wasn't drug therapy that I needed but a gluten-free diet. If my genes had been tested before diagnosis I would still be suffering needlessly, living off meds that did nothing for the pain. Because it is so important to remember I will say it again, it is your response to the diet that is most diagnostic.


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)

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 in time with proper diagnosis of Celiac November 2002

 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)

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Don't rely on those blood tests. You can't even really rely on the endo either, it can be hit and miss and while both tests can say for sure that you have celiac neither can say for sure that you don't. The true test is how you feel on the gluten-free diet. You don't need a doctors permission to eat gluten free. There are gene tests but they also can be problematical because there are only 2 genes that are considered celiac genes in the US. If you have one of the other celiac related genes instead you will be told that you don't have the genes and can not possibly be celiac. Gene testing is in it's infancy and not all the genes related to celiac are recognized as such. My gene for example is considered a RA gene here, which I did have all the symptoms of. However it wasn't drug therapy that I needed but a gluten-free diet. If my genes had been tested before diagnosis I would still be suffering needlessly, living off meds that did nothing for the pain. Because it is so important to remember I will say it again, it is your response to the diet that is most diagnostic.

Dear ravenwoodglass

i want to thank you for your post i was looking for simurla answers about weather or not to stay gluten free after never having a positive blood test, but after reading this post it brought back all the memories of just how sick i got and how much staying away from gluten made me feel better.

your right if you feel better after staying away from gluten then thats the proof in the pudding alone. thanks liz

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So he finally gave me the blood test, and it came back negative. Now he says there is "no chance" I have it, based only on that, and the fact that he insists that if I had celiac, I'd be losing weight rapidly and anemic. I actually put in a complaint to my insurance company about him and changed doctors. I hope someone learns something out of all this, because it was obvious this guy had no recent info about celiac, and I didn't trust my health to him.

So now I have a negative blood test, which I hear can happen even if you have it. I'm hoping that with all my symptoms and having a celiac-positive mother, my new doctor will still refer me to a GI so I can still get the other test(s). What does it mean if your blood test is negative (or as my doctor put it, "relatively normal")? Is there any reason I should try getting it done again? Or should I just go for the endoscopy?

I'm having a harder and harder time keeping up the regular diet (with gluten added), keep getting sick after I eat bread, etc., but I don't want to screw up the diagnosis by healing myself before my tests! Eep. Any advice or sympathy is appreciated. :)


Kathy

Gluten free 3/08

Negative blood work/positive endoscopy

Fructose Malabsorption

Soy free

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