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Positive Blood Work, Negative Biopsy

*lee-lee*

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*lee-lee* Enthusiast
*lee-lee*
Posted

please help me understand.

i can't tell if i "officially" have Celiac - i can't talk to my GI doctor until Monday

here's my timeline:

May 23 - blood work to test for Celiac

May 27 - started gluten-free test while waiting for blood work results

June 3 - blood work came back positive

June 4 - started gluten again and scheduled biopsy

June 24 - biopsy performed

July 1 - started gluten-free again

July 3 - doctors office (nurse) informed me the biopsy is negative but couldn't tell me anything else

i don't understand how the blood work can be positive but the biopsy negative. did i do the biopsy too soon after the 8 day gluten-free trial? maybe i skewed the results?

i felt better after the first gluten-free trial so i think that's my answer, regardless of the official diagnosis but i still would like to know. (i should also note my grandmother has Celiac so there is a family history.)

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Lisa Mentor
Lisa
Posted

Positive blood test and positive biopsy are diagnostic for Celiac. A negative results of these test cannot rule Celiac out. A biopsy can be hit and miss and is not considered a 100% diagnostic test, only if positive results.

Positive dietary response is also a diagnoses in itself. So, yes, with positive blood test, you do have Celiac. Welcome to the club.

PS: you might want to get a copy of the blood work that your doctors ordered and some people here can help to interpret the results.

Ridgewalker Contributor
Ridgewalker
Posted

It is perfectly possible to have a positive blood test and negative biopsy. A positive blood test means you do have Celiac Disease, no matter what the biopsy showed. It makes no sense for so many doctors to require a biopsy for diagnosis. Why? Because biopsy is unreliable.

Intestinal damage takes time to become visible. You may have Celiac for an unknown length of time before a biopsy would show up positive. Furthermore, Celiac damage is patchy, not constant. Taking a biopsy for this diagnosis is like playing Pin the Tail on the Donkey- you might hit a damaged spot, and you might not.

With a positive blood test, family history, and dietary response... That says Celiac.

Ursa Major Collaborator
Ursa Major
Posted

Could you tell us what your numbers were from your bloodwork?

Generally, the blood work is more reliable than the biopsies. Negative blood work results and negative biopsies can

ShayFL Enthusiast
ShayFL
Posted

I agree. Positive labs + positive dietary response = celiac

I would not believe the GI doc if he says you do not have celiac based soley on the biopsy. You could cause yourself years of suffering and set yourself up for cancers, auto-immune diseases associated with untreated celiac.

*lee-lee* Enthusiast
*lee-lee*
Posted
  • Author

ok, you guys are already making me feel better. i cried as soon as i hung up with the nurse today - she was absolutely no help and with the holiday weekend coming up, i couldn't bear the thought of waiting for more info until Monday.

i left a message requesting a copy of the blood work from the doctors office - hopefully they call me back today and can fax it right to me.

i'm off to the bookstore to find some good books on gluten-free living. i need all the help i can get...i miss my bread and pasta already!

Ridgewalker Contributor
Ridgewalker
Posted
i'm off to the bookstore to find some good books on gluten-free living. i need all the help i can get...i miss my bread and pasta already!

There are a lot of great books out there. And this forum is an excellent place to get info!

It'll take some trial and error to find breads that you like. But there's lots of choices these days... premade breads, mixes, recipes from scratch. And not all gluten-free pastas are created alike- there's brown rice pasta, white rice pasta, corn pasta, quinoa pasta, and even more. (My family's favorite is Tinkyada brand brown rice pasta.)

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nikky Contributor
nikky
Posted

I had the same thing happen to me. I would agree that you do have coeliac, theres no false positives and together with a good dietry response, positive blood tests are a good basis for confirming diagnosis. My GI said that in a few years he will stop doing biopsy's (if its just for this) because even those with negatives end up being diagnosed with coeliac unless he suspects it in someone with negative bloods. If i were you i would continue being gluten free.

Good luck

*lee-lee* Enthusiast
*lee-lee*
Posted
  • Author

i'm still waiting for the doctors office to mail the blood work results so i can give you guys the specifics but in the meantime i talked to my GI doc yesterday so he could explain the negative biopsy result and he said the blood could have been a false positive...is that possible or does he not have a clue what he's talking about?

he's sending me for more blood work to test for the genetic markers. he claims if the genetic markers are there, than maybe the blood was correct and the biopsy was a false negative. he did say the biopsy was remarkably normal - as in, no signs of any damage. i think he knows i need a definite answer so that's why he suggested the genetic test.

meanwhile, i'm feeling a lot better on the diet so if nothing else i at least have that to be happy about.

Lisa Mentor
Lisa
Posted

There are NO false positives with regards to blood tests for Celiac. There are, false negatives.

I have talked to several doctors and when they attended med school, there was only a brief reference to Celiac Disease and then, it was considered exceedingly rare. There have been some very rapid changes/research since then, and I believe few doctors are knowledgeable.

Welcome to the Club! ;)

*lee-lee* Enthusiast
*lee-lee*
Posted
  • Author

ok, all you people who can interpret blood work! what do you see?? :blink:

Antigliadin Abs, IgA = 1

Antigliadin Abs, IgG = 2

t-Transglutaminase (tTG) IgA = 19 (Flagged: HIGH)

(there's a note below this one that says "tTG has been identified as the endomysial antigen. Studies have deomonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy.")

t-Transglutaminase (tTG) IgG = 30 (Flagged: HIGH)

Endomysial Antibody IgA = Positive Abnormal

Immunoglobulin A, Qn, Serum = 199

is there anything about these results that could be questionable?

As i've said, the biopsy came back negative according to my GI doc (he even commented that it looked remarkably normal.) Now he wants me to test for genetic markers. that's fine by me...i don't have an issue with the test itself, except my insurance company tends to jerk me around and i get stuck with outrageous co-pays that i would like to avoid. i am responding well on the diet but would just like to have a firm diagnosis. and i don't have kids yet but am planning on it in the next few years so i'm concerned about passing the gene onto them. what are everyones thoughts on the genetic test? (it's through Prometheus - they're the only ones who perform this specific test i guess?)

jldanforth Newbie
jldanforth
Posted

I am a new group member and have been reading this thread with a lot of interest. I have not officially been diagnosed as having Celiac disease, at least my MD has not told me I have it. Based on my history of IBS and significant problems with bloating he did order blood work.

Here are my results: Antigliadin Antibody, IgG - 31 (high); Antigliadin Antibody, IgA - 14 (within normal limits) and Tissue transglutaminase Antibody, IgA - 4 (within normal limits). His comment was that since all tests weren't positive he wasn't sure. He suggested I 'decrease the amount of wheat' I eat. This was late last summer. I am still trying to consistently (greater than 4-5 days) go gluten-free. I find going diary-free has definitely helped the IBS.

I would like to ask the members, based on their knowledge, if they think my blood test was indicative of Celiac.

I am working on the dietary attempt to verify that going gluten-free helps.

JL

IBS times many years

Hypothyroidism

kristionii Rookie
kristionii
Posted

Hi,

I'm new to the board, but in the same position. I had a transglutamine blood test done in May, which came out positive. I just had my biopsy (endoscopy) done yesterday, and my doctor remarked that everything looked very good from what he saw, and he was surprised by that. Of course I don't get the actual results for another week, but it sounded like he was saying he was expecting the results to be negative. I spent the last 8 weeks eating tons of "bad" food that I may never get to eat again (and gaining 10lbs in the process!) and emotionally accepting my new way of life ... only now to feel like I'm going to get a negative biopsy result. I'm so confused. I'm actually hoping for a positive biopsy result so I can accept it and move on with my life.

So it's not possible for a positive blood test to be wrong?

Thanks,

K

happygirl Collaborator
happygirl
Posted

See this article for why the biopsy is NOT as accurate as doctors hope they are. Take this and discuss this with your doctor.

Open Original Shared Link

"Ninety-two percent had visible damage detected by capsule endoscopy while upper endoscopy only detected visible damage in 55% of the patients."

(Capsule endoscopy is not what you had.)

Study done by Mayo Clinic and Dr. Murray, who is a leading Celiac specialist/researcher.

*lee-lee* Enthusiast
*lee-lee*
Posted
  • Author

kristionii - are you my long lost sister?? :P

i, too, just want to know so i can get on with my bread-less life. problem is, i can't just accept that i feel better on the diet. there's just something that nags at me that makes me want a definite diagnosis but i'm quickly learning it's just not that simple. best of luck to you...i hope your biopsy comes back positive! LOL

betty6333 Newbie
betty6333
Posted

i have good news and bad news....

it is possible for you to not have celiacs(good news) BUT ----(BAD NEWS) YOU HAVE CELIACS

Let me explain

it is possible to get pos. blood work and not have celiacs, unfortunately if this were the case you would have much bigger problems that you would definately know about...... if you had type 1 autoimmune insulin dependent diabetes or autoimmune hepatitis, you very well could have had pos blood work and not have celiacs..... but you don't have those, because it is highly unlikely you would miss severe janudice or a coma.....

since you don't have either condition, the only other possible explanation is celiacs.

so, i am sorry they made you do an unnecessary biopsy that gave you false results....

you need to : either ----do a gluten challenge and get yourself really really sick, or, you can accept that you have celiacs and go gluten free ( and be very glad you do not have type1 diabetes or a fatal form of hepatitis!!!)

:

kristionii Rookie
kristionii
Posted

I'll definately discuss that article with my doctor if the result is (eek! negative).. thank you!

I'm definately one of those "planner" people - once I have my mind set, I want answers immediately so I can plan out my actions to move forward! Ahh if anything, waiting for this test result will teach me that I can't plan life! :)

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