I posted here a while back before I had my blood test – at that time, it was to rant a little about my doctor, who basically treated me like a hypochondriac for wanting to be tested for celiac (even though my mother has it, and I have the same symptoms she had).

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.

It all depends on what type of blood test he performed. If it was an HLS or gene study and it came back negative, then you don't have Celiac Disease. However, if he asked for an antibody level and it came back normal, then I'd pursue an endoscopy. Antibody tests are not the definitive answer here and I'd move to the next step, especially since your Mom has the disease.

H.

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.

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.

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

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!

Good idea!!

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?????

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

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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I so feel for you! I also tested negative back in January but continue to stay on the diet because it works for me. In order to test positive for celiac you need to have enough damage to your villa in order for the anitbodies to escape into your blood stream otherwise you will show negative. If you are in the early stages of celiac you may not have any damage yet (that would be a good thing). Listen to your body, if you respond to the diet that in itself tells you that you have problems with gluten and your body is saying stay away!
I know a definate diagnoses makes it alot easier but with most doctors not up to current research that makes it very difficult. You are right to keep eating the gluten if you want to keep proceeding; however for me it wasn't worth the pain and agony when I know the diet works for me. Also my brother in law tested negative repeatedly for celiac, it wasn't until he got the HD rash that he was finally officially diagnosed by a dermatologist, he is now symptom free after 3 years as long as he doesn't ingest gluten. Keep reading this forum, these veterans know what they are talking about! Good Luck