False Negatives For Bloodwork?

[nw0528]

Well...I thought I had celiac disease. My primary care dr. did too. In fact, I got a call from a nurse that the testing was positive. Well...there was an error (wrong person's bloodwork it seems). The nurse from my primary care physician's office just called me and told me my bloodwork is all back in and it is negative for celiac disease.

I asked her if I had celiac disease or gluten intolerance would it absolutely show on the bloodwork. She said yes it absolutely would, and it did not so I don't have celiac disease.

I have an appt. with my gastroenterologist next week.

I have heard about false positives with the celiac disease bloodwork - but what about false negatives?

I'm looking for advice from folks about what I might ask my doctor for now (repeat bloodwork, endoscopy, colonocopy, etc.)

AFTER the bloodwork, I started having some gluten-free meals and saw tremendous improvement. When I eat gluten meals, within 10 min. I am in the bathroom (or sometimes don't make it in time!) with diarrhea. When I eat gluten-free meals, no problem at all. So, Thursday when I got the initial call from the nurse, I started gluten-free. Now I'll be restarting gluten in prep. for possibly more bloodwork and biopsy.

I'm looking for advice on where to go from here!

Nicole

[ravenwoodglass]

Actually false positives ae not really all that common. Falso negatives are another story. They happen as much as 30% of the time. False negatives on biopsies are unfortunately common also. However your body knows. If you have good resolution of problems when gluten free and then become sick when you add gluten back in that is also part of the diagnostic process. And perhaps the most valid one of all.

[bear6954]

my son had negative blood work but classic celiac symptoms. had endoscopy done to confirm and it was very positive.

[JerryK]

I'm looking for advice from folks about what I might ask my doctor for now (repeat bloodwork, endoscopy, colonocopy, etc.)

AFTER the bloodwork, I started having some gluten-free meals and saw tremendous improvement. When I eat gluten meals, within 10 min. I am in the bathroom (or sometimes don't make it in time!) with diarrhea. When I eat gluten-free meals, no problem at all. So, Thursday when I got the initial call from the nurse, I started gluten-free. Now I'll be restarting gluten in prep. for possibly more bloodwork and biopsy.

I'm looking for advice on where to go from here!

Nicole

This is really all the diagnosis you need. I spent months doing gluten trials and learning for myself exactly how my body reacts.

Sounds like you won't be eating it in the long run...regardless of a diagnosis. The only thing a positive biopsy or blood test buys you

is perhaps some motivation to stick to the diet. Your body tells you what you shouldn't eat.

[nw0528]

. The only thing a positive biopsy or blood test buys you

is perhaps some motivation to stick to the diet. Your body tells you what you shouldn't eat.

Actually for me, I am hoping to find out for certain if I have celiac disease. To me there is a difference between seeing a correlation between eating gluten and my GI symptoms and making a choice to avoid gluten and knowing that I MUST be 100% gluten free or else I am doing damage to my small intestine.

Also, I have a two year old son. I'd like to know if I have celiac disease so that I can inform his pediatrician and make decisions about where to go from there. If I don't have celiac disease, then there is not this need.

I'm hoping the GI doctor next week will agree to do an endoscope for biopsies, a colonoscopy to rule out other GI conditions such as colitis, perhaps repeat bloodwork (maybe my primary care dr. didn't do all the bloodwork she should have, or maybe read the results incorrectly), and stool samples (or I'll use Enterolab myself). As I'm sure many of you have experienced, it is so frustrating to have figured out what is going on with our own bodies and then not have the darn bloodwork correspond!

Thanks,

Nicole

[david2000]

Hey All,

Well after several years of symptoms that pointed to my daughter having celiac, but doctors doing the tests twice and both coming back negative we continued down the wrong path doing all kinds of other tests and having her on reflux medicine for over a year. Unfortunately we were never told these could be falsely negative and we never thought of researching on our own. My wife recently went to a new doctor and he told her they can be false negative AND, and this is the kicker, there is another blood test that can check for one of two genetic markers to see if you can have celiac. It was covered by our insurance, my wife came back positive, and answered many of our longterm questions about her as well, and my 4 year old came back positive. To be clear this test will do two things - tell you for sure if you CAN have it. If you dont have either of these markers you cannot. If you do have one of these markers you could have celiac, or it could manifest itself at some point. It was clear from both my wife and daughters symptoms and from the doctors point of view that they both had it given all the symptoms and having the genetic marker. What does bother us is this test seems to be very much not known about as we have had litterally dozens of doctors appointments with many different doctors in their specialties at many different hospitals and in going back to some of them they were surprised to hear about it. Our primary care physician actually thanked us for helping him help his other patients. We did not want to do the endoscopy to find out for sure, so this was a great option for us. Anyway, I hope this helps.

Thanks, David

[david2000]

Hey All,

Well after several years of symptoms that pointed to my daughter having celiac, but doctors doing the tests twice and both coming back negative we continued down the wrong path doing all kinds of other tests and having her on reflux medicine for over a year. Unfortunately we were never told these could be falsely negative and we never thought of researching on our own. My wife recently went to a new doctor and he told her they can be false negative AND, and this is the kicker, there is another blood test that can check for one of two genetic markers to see if you can have celiac. It was covered by our insurance, my wife came back positive, and answered many of our longterm questions about her as well, and my 4 year old came back positive. To be clear this test will do two things - tell you for sure if you CAN have it. If you dont have either of these markers you cannot. If you do have one of these markers you could have celiac, or it could manifest itself at some point. It was clear from both my wife and daughters symptoms and from the doctors point of view that they both had it given all the symptoms and having the genetic marker. What does bother us is this test seems to be very much not known about as we have had litterally dozens of doctors appointments with many different doctors in their specialties at many different hospitals and in going back to some of them they were surprised to hear about it. Our primary care physician actually thanked us for helping him help his other patients. We did not want to do the endoscopy to find out for sure, so this was a great option for us. Anyway, I hope this helps.

Thanks, David

Well it does also appear this genetic test can be false negative as well which we were not told. Regardless it might be a logical next step in testing before the endoscopy...

https://www.celiac.com/articles/58/1/Geneti...ting/Page1.html

[nw0528]

David,

Thank you for your post. This is exactly what I was looking for! Your story (after so many visits to unhelpful doctors) can really help me. When I go to my GI and have him look over the bloodwork that my primary care dr. said was negative, I am going to ask about more bloodwork including this gene one you talked about. AND, it's perfect for my two year old son too!

Thank you!

Nicole

Hey All,

Well after several years of symptoms that pointed to my daughter having celiac, but doctors doing the tests twice and both coming back negative we continued down the wrong path doing all kinds of other tests and having her on reflux medicine for over a year. Unfortunately we were never told these could be falsely negative and we never thought of researching on our own. My wife recently went to a new doctor and he told her they can be false negative AND, and this is the kicker, there is another blood test that can check for one of two genetic markers to see if you can have celiac. It was covered by our insurance, my wife came back positive, and answered many of our longterm questions about her as well, and my 4 year old came back positive. To be clear this test will do two things - tell you for sure if you CAN have it. If you dont have either of these markers you cannot. If you do have one of these markers you could have celiac, or it could manifest itself at some point. It was clear from both my wife and daughters symptoms and from the doctors point of view that they both had it given all the symptoms and having the genetic marker. What does bother us is this test seems to be very much not known about as we have had litterally dozens of doctors appointments with many different doctors in their specialties at many different hospitals and in going back to some of them they were surprised to hear about it. Our primary care physician actually thanked us for helping him help his other patients. We did not want to do the endoscopy to find out for sure, so this was a great option for us. Anyway, I hope this helps.

Thanks, David

[lizard00]

Well it does also appear this genetic test can be false negative as well which we were not told. Regardless it might be a logical next step in testing before the endoscopy...

https://www.celiac.com/articles/58/1/Geneti...ting/Page1.html

Hey David

That article is over 10 yrs old, and a lot of info has been discovered regarding genetics and celiac. Even with the genetic testing, there can be a false negative,(can't say that I've heard of a lot of false positives) depending on what lab you use. If your wife and child came back positive for the markers, it's more than likely to be correct.

Here's some info published last year regarding the labs and new thoughts on the genetic markers. We have people on this forum that are biopsy confirmed celiacs, but do not carry either of the genes commonly tested for. So, even if you appear to not be genetically predisposed to develop celiac, it doesn't mean it's impossible.

https://www.celiac.com/articles/21628/1/Cel...tics/Page1.html

[happygirl]

Nicole, if you want the genetic testing done, ask for HLA DQ2 and HLA DQ8 to be run. Your GI should be aware of this.

You indicated that the nurse that you spoke to said that your bloodwork would show if you had Celiac or gluten intolerance. The bloodwork wouldn't really indicate non-Celiac gluten intolerance.

Stool testing does not diagnose Celiac.

You may be having a problem with gluten, and it may or may not be Celiac.

[nw0528]

Hi David,

I thought stool testing could be used as part of a diagnosis of celiac. I've seen others on here write about Enterolab regarding stool samples.

Now I'm curious!

Nicole

Nicole, if you want the genetic testing done, ask for HLA DQ2 and HLA DQ8 to be run. Your GI should be aware of this.

You indicated that the nurse that you spoke to said that your bloodwork would show if you had Celiac or gluten intolerance. The bloodwork wouldn't really indicate non-Celiac gluten intolerance.

Stool testing does not diagnose Celiac.

You may be having a problem with gluten, and it may or may not be Celiac.

[happygirl]

Does not diagnose Celiac. Can potentially indicate gluten sensitivity.

[bigsislivie]

Well...I thought I had celiac disease. My primary care dr. did too. In fact, I got a call from a nurse that the testing was positive. Well...there was an error (wrong person's bloodwork it seems). The nurse from my primary care physician's office just called me and told me my bloodwork is all back in and it is negative for celiac disease.

I asked her if I had celiac disease or gluten intolerance would it absolutely show on the bloodwork. She said yes it absolutely would, and it did not so I don't have celiac disease.

I have an appt. with my gastroenterologist next week.

I have heard about false positives with the celiac disease bloodwork - but what about false negatives?

I'm looking for advice from folks about what I might ask my doctor for now (repeat bloodwork, endoscopy, colonocopy, etc.)

AFTER the bloodwork, I started having some gluten-free meals and saw tremendous improvement. When I eat gluten meals, within 10 min. I am in the bathroom (or sometimes don't make it in time!) with diarrhea. When I eat gluten-free meals, no problem at all. So, Thursday when I got the initial call from the nurse, I started gluten-free. Now I'll be restarting gluten in prep. for possibly more bloodwork and biopsy.

I'm looking for advice on where to go from here!

Nicole

i have had numerous blood tests and a biopsy and they have all come back negative even though i have all the symptoms of celiac. (and they have already ruled out ibs and chrones and all that stuff.) i currently am waiting on the results for another celiac blood panel and right after i did the blood test earlier this week i went off gluten again for good and no matter what my results come back i am totally staying off of it cause i feel soooooo much better and my symptoms go away. false negatives happen a lot or so ive heard. if you feel good when you dont eat it then i would just stay off of it. if you are going to have a biopsy on the other hand then you have to eat as much gluten as you can to get a correct positive. trust me thats no fun i was like glutened for a month it was horrible:( well, hope this helps=]-livie