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Very Upset.. Told Blood Tests Are 90% Accurate! Help!

lmc22

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lmc22 Newbie
lmc22
Posted

So today my doctor informed me I don't have celiac because my blood panel was negative and that based on the blood panel done, he says I don't have the celiac gene. He also said the blood tests are 90% accurate. Is this true? I was under the impression that they are not very accurate. Also he told me that my biopsy was negative. I'm very devastated at this point... I literally have all the symptoms and then some! Yet my doctor says I do not have Celiac.. and none of the other 15+ specialists seem to know what's wrong if it's not Celiac disease :(

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kareng Grand Master
kareng
Posted

Were you gluten free when these tests were done? Can you get a copy of the exact tests and results? Just to make sure the doc requested the correct tests and read them correctly.

Open Original Shared Link

'In blood tests, are false positives less common than false negatives?

Even though blood tests are quite accurate, they are falsely positive 1-3% of the time (i.e., being positive without the person having celiac) and, although less commonly, falsely negative 1-2% of the time (i.e., being normal when a person actually has celiac).'"

Open Original Shared Link

"How accurate are the celiac blood tests?

The current diagnostic tests for celiac disease are very accurate, particularly when tTG and anti-endomysial antibodies are elevated. The isolated presence of anti-gliadin antibodies does not necessarily imply that the subject is affected by celiac disease, with the exception of children under the age of 2 in which tTG and EMA may not be present."

lmc22 Newbie
lmc22
Posted
  • Author

I requested the blood results be sent to me today.. so I should have them soon. They biopsy was taken from my small intestine in 5 different spots I think

lmc22 Newbie
lmc22
Posted
  • Author

I don't know if this helps but the blood panel I had done was the PROMETHEUS® Celiac PLUS

lmc22 Newbie
lmc22
Posted
  • Author

and I had been eating gluten for about 7 months before being tested.. before that I was gluten free

love2travel Mentor
love2travel
Posted

I requested the blood results be sent to me today.. so I should have them soon. They biopsy was taken from my small intestine in 5 different spots I think

Five is a small number, unfortunately. It is recommended that one has at least 8-12 biopsies taken otherwise it can be so very hit and miss.

bartfull Rising Star
bartfull
Posted

You could have non-celiac gluten intolerance. It is a very real condition with symptoms that are the same, just no intestinal damage. But the solution is the same - a gluten-free diet.

When you were gluten-free before, did your symptoms resolve?

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lmc22 Newbie
lmc22
Posted
  • Author

You could have non-celiac gluten intolerance. It is a very real condition with symptoms that are the same, just no intestinal damage. But the solution is the same - a gluten-free diet.

Thing is several drs thought it was Celiac.. because I have alot of symptoms that are not caused by simple gluten intolerance.

Five is a small number, unfortunately. It is recommended that one has at least 8-12 biopsies taken otherwise it can be so very hit and miss.

So in that case what do I do? :(

love2travel Mentor
love2travel
Posted

Thing is several drs thought it was Celiac.. because I have alot of symptoms that are not caused by simple gluten intolerance.

So in that case what do I do? :(

Symptoms for gluten intolerance and celiac can be very similar.

If the surgeon missed something with taking few biopsies I am unsure what to tell you. Sorry! :( It does happen, though.

But the bottom line is if gluten does make you sick, it is best you avoid it. The high number of people who do not get officially diagnosed is staggering. Many are happy to call it celiac and treat it as such as avoiding gluten makes them feel soooo much better. It is understandable that you are seeking something to put a name to your symptoms. I have read and heard that the average time for a celiac diagnosis in the U.S. and Canada is 12 YEARS! Isn't that insane??

I sincerely hope you find your answer. And soon!

GottaSki Mentor
GottaSki
Posted

Symptoms for gluten intolerance and celiac can be very similar.

If the surgeon missed something with taking few biopsies I am unsure what to tell you. Sorry! :( It does happen, though.

But the bottom line is if gluten does make you sick, it is best you avoid it. The high number of people who do not get officially diagnosed is staggering. Many are happy to call it celiac and treat it as such as avoiding gluten makes them feel soooo much better. It is understandable that you are seeking something to put a name to your symptoms. I have read and heard that the average time for a celiac diagnosis in the U.S. and Canada is 12 YEARS! Isn't that insane??

I sincerely hope you find your answer. And soon!

Exactly!

Do get written or electronic copies of your blood work and endscopy report. If you post them here, many of us can help interpret.

Often the best test for Celiac Disease and the only test for Non-Celiac Gluten Intolerance is the complete removal of gluten. Sounds like you have already spent some time gluten free. Perhaps it is time to remove it completely and document improvement.

"Loves2travel" is correct - NCGI shares many of the same symptoms as Celiac Disease and is still very new to the medical community. There has been very little research and is rare to find a Primary OR GI that will diagnose it. Sad, but true.

cassP Contributor
cassP
Posted

So today my doctor informed me I don't have celiac because my blood panel was negative and that based on the blood panel done, he says I don't have the celiac gene. He also said the blood tests are 90% accurate. Is this true? I was under the impression that they are not very accurate. Also he told me that my biopsy was negative. I'm very devastated at this point... I literally have all the symptoms and then some! Yet my doctor says I do not have Celiac.. and none of the other 15+ specialists seem to know what's wrong if it's not Celiac disease :(

did u have ALL the antibodies tested???? this is such a hard disease to diagnose- you really need ALL antibodies tested- not just the ttg for example. PLUS if you are LOW in IGA serum, then your iga antibodies will be innacurately low.

please consider going GLUTEN FREE even if you don't get a 100% dx.... i felt like i needed the dx as well, but now i know that the damage gluten can do to your body & mind is EXTENSIVE and not just localized to Celiac. i had no idea till after my Celiac self diagnosis-> just HOW MUCH Gluten had EXACERBATed my Graves :(

it could do all kinds of things like lead to Crohns, colitis, diverticulitis, cancer, thyroid disease, ataxia, etc etc etc

educate yourself- and dont rely soley on doctors- my Gi actually told me to get online- he said that they just dont know enough- and that i would find others online who would know more!

both my Gi AND my Integrative Doctor believe that Celiac is more of a spectrum, and that quite possibly (far enough into the future)- 30% of the population (with the dq genes) might all develop Celiac.

also- you dont have to have the classic celiac genes (dq2 and dq8) to have it.. others on here have been diagnosed with DQs with different #s like DQ9, DQ1, etc

WitsEnd Rookie
WitsEnd
Posted

What symptoms are caused by celiac and not gluten intolerance, besides intestinal damage? I mean that as a valid question...I'm still learning.

And please dont call it simple..it pretty much ruined my life for years. There's nothing simple about it and symptoms can be every bit as severe as a celiac suffers from.

lmc22 Newbie
lmc22
Posted
  • Author

did u have ALL the antibodies tested???? this is such a hard disease to diagnose- you really need ALL antibodies tested- not just the ttg for example. PLUS if you are LOW in IGA serum, then your iga antibodies will be innacurately low.

please consider going GLUTEN FREE even if you don't get a 100% dx.... i felt like i needed the dx as well, but now i know that the damage gluten can do to your body & mind is EXTENSIVE and not just localized to Celiac. i had no idea till after my Celiac self diagnosis-> just HOW MUCH Gluten had EXACERBATed my Graves :(

it could do all kinds of things like lead to Crohns, colitis, diverticulitis, cancer, thyroid disease, ataxia, etc etc etc

educate yourself- and dont rely soley on doctors- my Gi actually told me to get online- he said that they just dont know enough- and that i would find others online who would know more!

both my Gi AND my Integrative Doctor believe that Celiac is more of a spectrum, and that quite possibly (far enough into the future)- 30% of the population (with the dq genes) might all develop Celiac.

also- you dont have to have the classic celiac genes (dq2 and dq8) to have it.. others on here have been diagnosed with DQs with different #s like DQ9, DQ1, etc

I don't believe all the antibodies were tested.. I'll post the blood results here when I get them... as far as genetics goes he only tested me for 2 of the genes! I didn't even know there were more than 2! That makes me mad.. he led me to believe that there were only two possible for Celiac! Unbelievable!! I have my endoscopy results with me.. What part of that should I post on here? It's basically pictures of each section that passed through :/ with a small description at the bottom

kareng Grand Master
kareng
Posted

I don't believe all the antibodies were tested.. I'll post the blood results here when I get them... as far as genetics goes he only tested me for 2 of the genes! I didn't even know there were more than 2! That makes me mad.. he led me to believe that there were only two possible for Celiac! Unbelievable!! I have my endoscopy results with me.. What part of that should I post on here? It's basically pictures of each section that passed through :/ with a small description at the bottom

Did you get a copy of the pathology report? This is from the special doctor (Pathologist) that looks at the small intestine samples.

In the US, they look for the 2 most common genes:

Open Original Shared Link

Of course, even if these are all negative, you could have non-celiac gluten intolerance. The only way to find that out is to eliminate gluten for a few months and see if you feel better.

lmc22 Newbie
lmc22
Posted
  • Author

Did you get a copy of the pathology report? This is from the special doctor (Pathologist) that looks at the small intestine samples.

In the US, they look for the 2 most common genes:

Open Original Shared Link

Of course, even if these are all negative, you could have non-celiac gluten intolerance. The only way to find that out is to eliminate gluten for a few months and see if you feel better.

I didn't receive the pathology report. Could those results be interpreted here?

ravenwoodglass Mentor
ravenwoodglass
Posted

First off your doctor says the tests are 90% accurate. What if you are one of the 10% for which they are not accurate? Doctors going off those blood tests cost me years of my life and some permanent damage. It sounds like you have been through a lot of what I went through, doctors and more doctors and tests and more tests and doctors still throwing their arms up and saying I don't know. I also had classic celiac symptoms that screamed I had celiac but doctors only looked at the paper and not at the person. You don't need a doctors permission to be gluten free and after all your issues fall away your doctor may open his eyes and say 'I guess it was celiac after all'.

GottaSki Mentor
GottaSki
Posted

I didn't receive the pathology report. Could those results be interpreted here?

Yes.

You can post both the written observation from the doctor and the pathology report here and we'll try to help.

Call your doctor's office and request a written or electronic copy of the endoscopy report with pathology of any samples taken. Even though you already have the report with pictures I'd ask for them both in case the doc added any observation/explanation after your procedure.

GottaSki Mentor
GottaSki
Posted

First off your doctor says the tests are 90% accurate. What if you are one of the 10% for which they are not accurate? Doctors going off those blood tests cost me years of my life and some permanent damage. It sounds like you have been through a lot of what I went through, doctors and more doctors and tests and more tests and doctors still throwing their arms up and saying I don't know. I also had classic celiac symptoms that screamed I had celiac but doctors only looked at the paper and not at the person. You don't need a doctors permission to be gluten free and after all your issues fall away your doctor may open his eyes and say 'I guess it was celiac after all'.

Raven is absolutely correct!

Even though I tested positive on antibodies (barely) with total villous atrophy and have enough copies of genes that all my children have the genes. One of my sons was unable to get diagnosed because of neg blood work despite complete symptom resolution after removing gluten. You do not need a doctor's blessing - it is unfortunate that we have to fight for diagnosis in the first place.

julieb Newbie
julieb
Posted

So today my doctor informed me I don't have celiac because my blood panel was negative and that based on the blood panel done, he says I don't have the celiac gene. He also said the blood tests are 90% accurate. Is this true? I was under the impression that they are not very accurate. Also he told me that my biopsy was negative. I'm very devastated at this point... I literally have all the symptoms and then some! Yet my doctor says I do not have Celiac.. and none of the other 15+ specialists seem to know what's wrong if it's not Celiac disease :(

Hi there. I am newly diagnosed with Celiac. My family doctor was the one who diagnosed me. Fortunately, my blood work came back accurately. Although, his daughter has Celiac and she tested negative to both the bloodwork and the biopsy. Once my doctor took his daughter off of wheat, all her symptoms dissapeared within a few weeks. This goes to show that the bloodwork or a biopsy is not always accurate. I strongly suggest cutting wheat out for 2 weeks, and see how you feel. It is the most accurate test, in my eyes. Hope this helps.

dilettantesteph Collaborator
dilettantesteph
Posted

If the blood tests are 90% accurate, that means that 10% of the time they are not accurate. You could be one of the 10%.

mommida Enthusiast
mommida
Posted

I just want to add when we had genetic testing for Celiac with Prometheus labs we got back confusing results. This genetic test was said to be at least 99% accurate. So when my test result did not have a close enough match to my biological daughter, we had questions. So Prometheus labs would not do the testing over and offered these reasons.. the known miss rate of 1%, genes mutate, and EVERY blood test has a human error rate of 30%. They very strongly put 30% error rate on the collection of specimen, handling of specimen, and interpreting of the results on human error.

cassP Contributor
cassP
Posted

I don't believe all the antibodies were tested.. I'll post the blood results here when I get them... as far as genetics goes he only tested me for 2 of the genes! I didn't even know there were more than 2! That makes me mad.. he led me to believe that there were only two possible for Celiac! Unbelievable!! I have my endoscopy results with me.. What part of that should I post on here? It's basically pictures of each section that passed through :/ with a small description at the bottom

i never had the endoscopy- and wouldnt know how to read it- BUT maybe others on here could for you

most doctors and medical journals in the US are just behind on this disease- they think it's only from DQ2 and DQ8-> but overseas they are diagnosing Celiacs with different DQ#s. believe me, it wont be the first or last time your doctors dont know anything... sorry im bitter and frustrated :/

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