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Negative Blood Test?

cdog7

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cdog7 Contributor
cdog7
Posted

I posted here a while back before I had my blood test

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Helen Kendrick Newbie
Helen Kendrick
Posted
I posted here a while back before I had my blood test
Lisa Mentor
Lisa
Posted

Open Original Shared Link

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.

lizard00 Enthusiast
lizard00
Posted

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.

happygirl Collaborator
happygirl
Posted

Definitely need to get a copy of your results so that you can tell which tests were run.

cdog7 Contributor
cdog7
Posted
  • Author
Open Original Shared Link

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!

cdog7 Contributor
cdog7
Posted
  • Author
Definitely need to get a copy of your results so that you can tell which tests were run.

Good idea!!

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jayhawkmom Enthusiast
jayhawkmom
Posted
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?????

ravenwoodglass Mentor
ravenwoodglass
Posted

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.

lizzy Apprentice
lizzy
Posted
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

ksymonds84 Enthusiast
ksymonds84
Posted

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. :)

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