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


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#1 lmc22

 
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Posted 05 November 2012 - 02:53 PM

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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#2 kareng

 
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Posted 05 November 2012 - 02:59 PM

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.



http://www.curecelia...false-negatives

'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).'"



http://www.celiaccen...aq.asp#accurate
"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."

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#3 lmc22

 
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Posted 05 November 2012 - 03:13 PM

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
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#4 lmc22

 
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Posted 05 November 2012 - 03:16 PM

I don't know if this helps but the blood panel I had done was the PROMETHEUS® Celiac PLUS
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#5 lmc22

 
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Posted 05 November 2012 - 03:19 PM

and I had been eating gluten for about 7 months before being tested.. before that I was gluten free
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#6 love2travel

 
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Posted 05 November 2012 - 03:49 PM

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.
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#7 bartfull

 
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Posted 05 November 2012 - 04:06 PM

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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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#8 lmc22

 
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Posted 05 November 2012 - 04:58 PM

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? :(
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#9 love2travel

 
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Posted 05 November 2012 - 05:09 PM

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!
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#10 GottaSki

 
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Posted 05 November 2012 - 05:49 PM

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.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#11 cassP

 
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Posted 05 November 2012 - 07:28 PM

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
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1986- Elevated Speckled ANA/no Lupus.negative Sjorgens
2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.
no biopsy (insurance denied)
6/2010- Enterolab Gene Test:
HLA-DQB1 Allele 1 0302
HLA-DQB1 Allele 2 0302
HLADQ 3,3 (subtype 8,8)
7/2010- 100% Gluten Free
8/2010- DH
10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

#12 WitsEnd

 
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Posted 05 November 2012 - 08:55 PM

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.
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#13 lmc22

 
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Posted 05 November 2012 - 09:28 PM

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
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#14 kareng

 
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Posted 05 November 2012 - 09:45 PM

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:

http://www.curecelia...benefit-from-it


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.
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LTES

 
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#15 lmc22

 
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Posted 05 November 2012 - 11:37 PM

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:

http://www.curecelia...benefit-from-it


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?
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