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Positive Bloods But Negative Biopsy?

deviation

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deviation Newbie
deviation
Posted

Hi all,

I'm new round here and have a quick question. (Apologies if it has been answered before). I've got positive blood test results for celiac, but am awaiting the results of my biopsy and of course all sorts of scenarios are running through my head. I'm wondering - in the case that my biopsy doesn't show celiac - why would someone test positive to celiac in blood results and it now show up through the biopsy? Would it mean, perhaps, gluten intolerance instead of celiac?

Many thanks in advance! :-)

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Guest j_mommy
Guest j_mommy
Posted

It would still mean you have celiac. If teh antibodies are in your blood you have celiac.

If the biopsy is Neg, it could be that they missed an area affected. This happens if they don't take enough samples.

Lisa Mentor
Lisa
Posted

These are the test for the Serologic Panel for Celiac:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

If these are in the positive range, you do have Celiac. A biopsy can be hit and miss as to where the samples are taken. A biopsy can confirm celiac, but it cannot rule it out. And, or course, and endoscopy exam can look for other issues.

deviation Newbie
deviation
Posted
  • Author

Thanks momma-goose and j_mommy for the very quick replies. I don't have a copy of the results with me anymore but the total IgA level was just in the positive range. I guess I'm just afraid that if I go to the GP later this week and they say everything looks normal with the biopsy I'll just be sent home. I know shouldn't be catastrophising it before it happens (but that's part of my nature, LOL) but the wait for the results is so awful.

Lisa Mentor
Lisa
Posted
Thanks momma-goose and j_mommy for the very quick replies. I don't have a copy of the results with me anymore but the total IgA level was just in the positive range. I guess I'm just afraid that if I go to the GP later this week and they say everything looks normal with the biopsy I'll just be sent home. I know shouldn't be catastrophising it before it happens (but that's part of my nature, LOL) but the wait for the results is so awful.

Well, sure they will send you home. There is nothing they can do for you other than recommend the gluten free diet. I think you know you have your answer.

Stop worrying and start reading up on the gluten free diet. And, welcome to the club! ;)

deviation Newbie
deviation
Posted
  • Author
Well, sure they will send you home. There is nothing they can do for you other than recommend the gluten free diet. I think you know you have your answer.

Stop worrying and start reading up on the gluten free diet. And, welcome to the club! ;)

Very, very good advice MG, thanks! I am so glad I found this community. Thanks again for your responses - I am feeling a bit calmer about it all now :-)

jayhawkmom Enthusiast
jayhawkmom
Posted
but the total IgA level was just in the positive range. I guess I'm just afraid that if I go to the GP later this week and they say everything looks normal with the biopsy I'll just be sent home. I know shouldn't be catastrophising it before it happens (but that's part of my nature, LOL) but the wait for the results is so awful.

I'm pretty sure that the Total IgA is just run to make sure there isn't selective IgA deficiency... and that there really isn't a "positive or negative" range for TOTAL IgA. There is a "normal" range, but outside of it doesn't make it positive or negative, it means it deficient or "not." Right??

Or, am I mistaken...and it's a positive tTg IgA?

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deviation Newbie
deviation
Posted
  • Author
I'm pretty sure that the Total IgA is just run to make sure there isn't selective IgA deficiency... and that there really isn't a "positive or negative" range for TOTAL IgA. There is a "normal" range, but outside of it doesn't make it positive or negative, it means it deficient or "not." Right??

Or, am I mistaken...and it's a positive tTg IgA?

I'm a complete newbie at this, but I think what I meant was that my total IgA was just above the normal range. Not that I know what that means anyway! :-) Aaah the learning curve of a (possible) new condition!

Lisa Mentor
Lisa
Posted

Open Original Shared Link

Here is some information from our achieves. I am not great at interpreting testing so perhaps this may help you determine where you are. But I do know that something is cooking.

jayhawkmom Enthusiast
jayhawkmom
Posted

That link confuses me even more... but also says the same thing, there really is no explanation for "over the limits" Total Serum IgA. My son had a similar issue. TOTAL IgA was "over the normal limits" but all other results (AGA's, tTg Ab's, EMA) were all within range. I was told it was just a "fluke." And, there was no further offer of explanation.

Lisa Mentor
Lisa
Posted
That link confuses me even more... but also says the same thing, there really is no explanation for "over the limits" Total Serum IgA. My son had a similar issue. TOTAL IgA was "over the normal limits" but all other results (AGA's, tTg Ab's, EMA) were all within range. I was told it was just a "fluke." And, there was no further offer of explanation.

Laura (happygirl) would know. I'll see if I can knock on her door and see if she's home.

jayhawkmom Enthusiast
jayhawkmom
Posted

Thank you! I'm really not trying to argue or debate, I'm really just trying to understand. Thus far, no one has been able to give me any reason why my kiddo's IgA levels were so wonky. Though, one person told me that it's associated with diabetes, and that scared the bejeepers out of me.

deviation, I hope that we are able to help you out.... I really am not trying to "rat hole" your thread. I'm just trying to understand, as I know you are... too! =)

deviation Newbie
deviation
Posted
  • Author
deviation, I hope that we are able to help you out.... I really am not trying to "rat hole" your thread. I'm just trying to understand, as I know you are... too! =)

No, that is totally fine... 'rat hole' away!!! :-) This discussion is really helping me! And thanks for that link to the archives, momma goose, will have a look at that a bit later.

nikky Contributor
nikky
Posted

if your biopsy is clear - dont be disheartened

it hapened to me, but my bloods were so high that my consultant decided to start me on the new diet in december

the normal range is 1-10, my bloods over 200, and the biopsy was still clear

i think it would depend on your range if it was only 5-10 over the 'limit' then and your biopsy was clear then they would probably just monitor you

jayhawkmom Enthusiast
jayhawkmom
Posted
the normal range is 1-10, my bloods over 200, and the biopsy was still clear

That depends on the lab... and total serum IgA doesn't typically have a range of 1-10 - it's significantly higher than that. In fact, for the lab we went through, their reference range for total serum IgA was 40 - 400. Anything within that range was considered normal. (again... that's for TOTAL SERUM IgA - nothing else) Mine was 331.

However, the other references ranges varied according to individual test.

Editing to add.... Total Serum IgA is also age based in some labs. The normal reference ranges for a 10 year old are significantly different than the reference ranges for a 30 year old, for example.

nikky Contributor
nikky
Posted
That depends on the lab... and total serum IgA doesn't typically have a range of 1-10 - it's significantly higher than that. In fact, for the lab we went through, their reference range for total serum IgA was 40 - 400. Anything within that range was considered normal. (again... that's for TOTAL SERUM IgA - nothing else) Mine was 331.

i was going by the UK NHS ranges, i didnt realise that it varies with age either

jayhawkmom Enthusiast
jayhawkmom
Posted

Perhaps since you are in the UK - there is a true "standard" that is THE standard with regards to Celiac testing???

In the US - there simply isn't one. Each lab has their own set of positive and negative criteria. Which, incidentally, could cause one lab to say someone's results are TOTALLY negative, where the same blood, at a different lab, might be thought to be extremely positive.

Wow, I wish there was a "standard" standard here in the US!!!!

With regards to the IGA, the optimal "level" isn't reached until after puberty - a small child automatically makes MUCH less IgA than a full grown adult. So, there are ranges established to compensate for age. Even still, children who are often deficient simply aren't old enough to produce (or have) optimal levels. But, not having enough - regardless of age - can render the other tests invalid.

I apologize if I'm not making much sense. I've had far too much chocolate today and I'm suffering from a sugar buzz. LOL!

nikky Contributor
nikky
Posted

ok, i feel sorry for people living in the U.S then

sorry for any confusion i caused, i was just going on what my GI told me

jayhawkmom Enthusiast
jayhawkmom
Posted
ok, i feel sorry for people living in the U.S then

sorry for any confusion i caused, i was just going on what my GI told me

It's ok!! And, yes... those of us, in the US, who are lucky enough to have a competent doctor on our sides also feel very sad and sorry for those who aren't able to find one! In the US, they are still fairly few and far between. =(

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