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Blood Test Result Statistics - Place A Vote, Make A Difference!


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Poll: How common are false negatives? (21 member(s) have cast votes)

I have a gluten intolerance. My (first) blood test came back...

  1. Positive (6 votes [28.57%])

    Percentage of vote: 28.57%

  2. Negative (falsely) (15 votes [71.43%])

    Percentage of vote: 71.43%

Vote Guests cannot vote

15 replies to this topic

#1 Oats

 
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Posted 05 January 2012 - 01:56 PM

So many people are wondering how common false negative blood tests for celiac disease are - or to be precise - what the chances are of having celiac disease or non-celiac gluten sensitivity if your doctor tell you that you can go ahead and eat gluten.

If you know you are gluten sensitive - PLEASE VOTE, whether your blood tests straight forward told you you were POSITIVE for Celiac, or they falsely showed up NEGATIVE, and you had find out for yourself that gluten was the culprit. It could make a great difference for someone suffering like you probably have suffered - perhaps for several years!

Off course - this poll will still overlook all the unknowing celiacs out there, mislead by blood tests - who probably stand for the greatest percentage of false negatives.



To make it simple, I only added two alternatives. This is to clearly show the proportions between positives and false negatives.

Thank you for your vote!
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#2 beebs

 
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Posted 05 January 2012 - 03:30 PM

Yeah, negative for me. If I eat gluten I end up with a life threatening condition that has me in ER. So deffo problem with gluten.

Interestingly - I also have other autoimmune conditions which they can't figure out - and my bloods are always negative for those things as well...some kind of connection perhaps?
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HLA DQ8, gluten-free since January 2011

#3 stanleymonkey

 
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Posted 05 January 2012 - 03:55 PM

our daughter had positive gene test but everything else was negative, the GI at the children's hospital said that meant she had absolutely no issue with gluten and her tummy problems and rashes were nerve damage, we went gluten free and all her issues disappeared
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#4 Roda

 
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Posted 06 January 2012 - 09:15 PM

My IgA tTG was positive. I didn't know about the other tests at the time. I had a positive biopsy, but my GI said I had a "choice" to either go gluten free and follow up in 6 months or continue eating gluten and repeat the blood work in three months. WTF? I went gluten free...DUH that was a no brainer given my test results.
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Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#5 Bubba's Mom

 
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Posted 07 January 2012 - 08:22 AM

I tested negative to Celiac, but my endoscope showed severe villi flattening and a duodenal ulcer. I was DXed based on that.
Since going gluten-free I've found that I'm hyper sensitive to soy. I've read that soy can cause villi flattenng too, so it has me wondering if my problem is really soy, with a gluten intolerance due to damage in the intestine? A re-scope now that I'm at the 6 months gluten-free stage revealed moderate to severe villi flattening. My health has not improved gluten-free.
I didn't remove every trace of soy until Nov 19. I found it as tocopherol in vitamin supplements, in fish oil supplements, vitamin D supplements. I had only been looking at foods with soy ingredients.

I'm curious if anyone else that tested negative has a secondary intolerance to dairy, soy, or lectins in general? From my reading I find these other things can cause villi flattening and might be mimicking Celiac?
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#6 Skylark

 
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Posted 07 January 2012 - 09:31 AM

I was never tested but I'm voting for my mom. She was tested and scoped, both negative. She is DQ2 and definitely gluten-sensitive.
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#7 a1956chill

 
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Posted 07 January 2012 - 11:37 AM

My blood test was negative, my only endoscopy was 16 months after I was gluten free .

I was diagnosed with celiac because: I had a positive DH biopsy, tested positive for Hashimotos and most of my symptoms responded to a gluten free diet .
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Gluten free Oct/09
Soy free Nov/10

numerous additional intolerances,, i.e. If it tries to kill me I do not eat it .
After 40+ years of misdiagnoses I was diagnosed with:
Dermatitis Herpetiformis : Positive DH biopsy...... Celiac :based on DH biopsy and diet response.

Osteoporosis before  age 50
Hashimoto's thyroiditis disease .

Diagnosed type 2 Diabetes 

Osteoarthritis

Gilbert's Syndrome , confirmed by gene testing


#8 beebs

 
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Posted 07 January 2012 - 02:11 PM

Geez- already this poll is looking pretty scary...and we are the ones who have figured it out - what about all those other people who continue eating Gluten because they are told they are negative...like my cousin - who has been so ill for years but had a negative biopsy and blood but is totally convinced that its not gluten even though his family history screams to at least check it out :o
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HLA DQ8, gluten-free since January 2011

#9 GFinDC

 
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Posted 07 January 2012 - 02:47 PM

I tested negative on blood antibodies but the blood draw was 3 months after I went gluten-free. I did get a positive hit on one of the gens but I don't remember which one. I think it is the one that makes you grouchy in the morning though.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#10 a1956chill

 
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Posted 07 January 2012 - 02:57 PM

I did get a positive hit on one of the gens but I don't remember which one. I think it is the one that makes you grouchy in the morning though.

I think I hit positive for that same one, :lol:
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Gluten free Oct/09
Soy free Nov/10

numerous additional intolerances,, i.e. If it tries to kill me I do not eat it .
After 40+ years of misdiagnoses I was diagnosed with:
Dermatitis Herpetiformis : Positive DH biopsy...... Celiac :based on DH biopsy and diet response.

Osteoporosis before  age 50
Hashimoto's thyroiditis disease .

Diagnosed type 2 Diabetes 

Osteoarthritis

Gilbert's Syndrome , confirmed by gene testing


#11 Aly1

 
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Posted 08 January 2012 - 08:15 AM

I am a little confused by this poll, so maybe someone will educate the newbie! (Or maybe it's just my brain fog, I am out of it this am!). I thought that there are 2 conditions - celiac and gluten intolerance (well, wheat allergy too, but that's irrelevant here) that fall under an umbrella term of gluten sensitivity. I thought that it's possible to have false negatives for celiac (which is gluten damage specific to the intestines) but that gluten intolerance (non-celiac reactions to gluten) do not show up on tests. Is that incorrect? I tested negative for celiac (bloods only) so I believe that, unless my test was a false negative, I therefore fall into the gluten intolerant category. Do I have it wrong somewhere?
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#12 Skylark

 
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Posted 08 January 2012 - 08:20 AM

I think the point of the poll is to show everyone how many people with negative blood tests (for whatever reason) still get sick from eating gluten.
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#13 Aly1

 
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Posted 08 January 2012 - 08:42 AM

Oh okay so I am clueless in a different way :oD. But - are there tests that show plain gluten intolerance?

And i voted Negative. I tested negative and get So Sick on gluten.
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#14 Oats

 
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Posted 08 January 2012 - 08:51 AM

Most doctors leave it at that if the patient tests negative for celiac - not even considering that non-celiac gluten sensitivity might cause the same symptoms!
So yes, the point is to figure out how likely it is that gluten is the culprit, even if you test negative for celiac (no matter if you actually are celiac or the gluten your sensitivity to gluten has a different cause)

I am really surprised by these results... And glad I made the poll so more people won't immediately rule out gluten as the cause of their troubles.


With these results its hard to believe that the the blood tests are supposed to be over 90 % accurate!
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#15 Skylark

 
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Posted 08 January 2012 - 11:00 AM

With these results its hard to believe that the the blood tests are supposed to be over 90 % accurate!

This is hardly a controlled study. :P

I'm not sure where got the idea celiac testing is 90% accurate. The studies I've read on the sensitivity of celiac tests give wildly variable numbers depending on both how well the assay is performing and how severe the celiac damage is. I've seen results as low as 70% specificity. You only get 90% under optimal conditions.

Aly1 - No, there is no test for non-celiac gluten intolerance other than response to the diet.
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