Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Can Stool Test Show Antibodies That Were Missesd By Blood Test?


Sandi*

Recommended Posts

Sandi* Apprentice

I am wondering whether the stool test done by enterolab could show antibodies that were missed by the regular blood test. I've had tests for celiac before - blood test at the GI's office, home blood test (Biocard), upper GI endoscopy, coloscopy, and finally the camera pill. All was negative for celiac disease. The only thing that was found was an inflammation of the colon (which my doc didn't even tell me, I only found out yesterday when I was reviewing my file, at least he did write it down).

Anyways, the curious thing about the blood test was that my IgA levels were very low (10 whereas the normal range is 70-400). I know this can affect the acuracy of the results. I'm thinking about doing the Enterolab stool test. My question is, though, would my low IgA cause a false negative? I don't want to waste $$$ on a test that may not be valid for me.

I'm also undergoing a gene panel testing, hopefully I will get the results soon. However, I'm really scared that all the tests will be negative. I would love to have some proof that it's not just in my head and I should stick to the diet. Also, it would help me decide if I need to avoid just wheat or actually gluten. I do feel much better when I avoid wheat but I'd like to know how strict with the diet I need to be. Avoiding wheat only is definitely much easier.

I'm actually a bit jealous of people on here who got dx by the "gold standard", went on the diet and got better. My whole life I've been told "it's IBS, eat more fiber and stop worrying about it". I'm just sick of doctors and "professionals" who don't get it.

Sorry for typos, I'm using my iphone while waiting in a doctor's office (orthopedist).


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Mother of Jibril Enthusiast
Anyways, the curious thing about the blood test was that my IgA levels were very low (10 whereas the normal range is 70-400). I know this can affect the acuracy of the results. I'm thinking about doing the Enterolab stool test. My question is, though, would my low IgA cause a false negative? I don't want to waste $$$ on a test that may not be valid for me.

I'm also undergoing a gene panel testing, hopefully I will get the results soon. However, I'm really scared that all the tests will be negative. I would love to have some proof that it's not just in my head and I should stick to the diet. Also, it would help me decide if I need to avoid just wheat or actually gluten. I do feel much better when I avoid wheat but I'd like to know how strict with the diet I need to be. Avoiding wheat only is definitely much easier.

Hi Sandi,

Considering that you're IgA deficient, a blood test is useless. If you're still eating gluten you might want to go looking for a gastroenterologist who's willing to do an endoscopy. You could also get tested for an allergy to wheat, but is it really that much more difficult to avoid rye, barley, and oats? I find that rye is very easy to avoid! Barley is not that difficult either once you realize that "brown rice syrup" = barley in disguise. There are sooo many other grains :) The genetic test could also give you some answers. Don't panic if you're not a DQ2 or DQ8 (although you could be)... post the results on here and other people will help you interpret them.

Sandi* Apprentice
Hi Sandi,

Considering that you're IgA deficient, a blood test is useless. If you're still eating gluten you might want to go looking for a gastroenterologist who's willing to do an endoscopy. You could also get tested for an allergy to wheat, but is it really that much more difficult to avoid rye, barley, and oats? I find that rye is very easy to avoid! Barley is not that difficult either once you realize that "brown rice syrup" = barley in disguise. There are sooo many other grains :) The genetic test could also give you some answers. Don't panic if you're not a DQ2 or DQ8 (although you could be)... post the results on here and other people will help you interpret them.

Thank you for your answer. I'm actually trying to get an appointment with a GI doctor that got good reviews online, but cannot get a hold of anyone in her office. I think it might be closed for summer while she works at a hospital or something. However, I'm staying away from gluten right now. I had some pizza bread last week (I though I could get that appointment soon so I should eat it anyway) but I was in so much pain the next day that I decided it's just not worth it.

As for avoiding gluten, yes, avoiding other grains would not be much harder. However, I'm always paranoid about things that are hidden gluten sources, such as certain candy, bouillon cubes, meals that other people prepared and claim are gluten-free but may actually not be... This is why it'd be easier to avoid just wheat or even other gluten-containing grains. I try to prepare most of my meals but often I just need to grab something convenient.

Yes, I will post results when I get them, although I will probably stick to a gluten-free diet anyway.

I actually did have an allergy test, I forgot to mention that. Nope, nothing, as usual. All of my doctors aways tell me how healthy I am. Well, why am I always in so much pain? Go figure...

ravenwoodglass Mentor

How long ago was the endoscopy? If you are not going to have it redone then you may just want to try the diet strictly for a bit. Enterolab can test if you are recently gluten free and I personally would think about getting the test. They also gene test for more than just the typical DQ2 or 8 so that can be quite helpful also. They do not diagnose celiac but they can tell you if you are forming antibodies. They can also test for antibodies to other proteins like casien (milk), soy, egg and can test for yeast and malabsorption. Some of us are very hard to diagnose and your very low IGA might be a factor in the Enerolab testing also. If and when you decide to order the tests do email or call them first to discuss whether the low IGA might negate some of the tests.

ravenwoodglass Mentor
Yes, I will post results when I get them, although I will probably stick to a gluten-free diet anyway.

I actually did have an allergy test, I forgot to mention that. Nope, nothing, as usual. All of my doctors aways tell me how healthy I am. Well, why am I always in so much pain? Go figure...

I am glad to see that you are going to stick with the diet.

Celiac doesn't show up on allergy testing. Celiac is an autoimmune reaction and allergy is a histamine reaction. Some allergists can guide folks through an elimination diet but those are becoming fewer. I also had a hard time with being diagnosed because of false negative blood tests. It can be very frustrating and disheartening. Hang in there and hopefully the diet is the answer for you.

tom Contributor
..... Barley is not that difficult either once you realize that "brown rice syrup" = barley in disguise.

I know there's been some controversy on this in the past (reminds me of bleu cheese controversy), but I'm pretty darn sure there are loads of gluten-free products from reputable companies using brown rice syrup as a sweetener.

ravenwoodglass Mentor
I know there's been some controversy on this in the past (reminds me of bleu cheese controversy), but I'm pretty darn sure there are loads of gluten-free products from reputable companies using brown rice syrup as a sweetener.

I agree, not all the brown rice syrup uses barley malt, some do though so it is best to call the company and ask before use. The biggest danger seems to me to the companies hiding it malt in the flavorings. If it is in a small enough amount companies can consider it a flavor and flavoring does not have to be declared as to it's components.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



elye Community Regular

I'm one of the "lucky" ones who got a positive diagnosis from the blood panel, and damage visible in the subsequent endoscope. :) My husband, however, had all of the classic symptoms and had a negative blood result and negative biopsy. If memory serves me, his IGA number was low.

He decided to spring for the Enterolab stool test, where the antibodies were clearly seen - - a lot of them. There was also a large percentage of fat present in the stool, again indicative of malabsorption issues.

DH went gluten-free right away, and all of his symptoms disappeared within a month or so. He's a new guy. :)

Sandi* Apprentice
How long ago was the endoscopy? If you are not going to have it redone then you may just want to try the diet strictly for a bit. Enterolab can test if you are recently gluten free and I personally would think about getting the test. They also gene test for more than just the typical DQ2 or 8 so that can be quite helpful also. They do not diagnose celiac but they can tell you if you are forming antibodies. They can also test for antibodies to other proteins like casien (milk), soy, egg and can test for yeast and malabsorption. Some of us are very hard to diagnose and your very low IGA might be a factor in the Enerolab testing also. If and when you decide to order the tests do email or call them first to discuss whether the low IGA might negate some of the tests.

The biopsy was 3 years ago, the latest blood test (the home test was last year). Since then I've been on the diet on and off (felt a bit better, then had a bad day, decided it wasn't worth it, and so on). It's a good idea emailing the lab before.

I know there's been some controversy on this in the past (reminds me of bleu cheese controversy), but I'm pretty darn sure there are loads of gluten-free products from reputable companies using brown rice syrup as a sweetener.

I didn't know this. Definitely something else to watch out for :(.

I'm one of the "lucky" ones who got a positive diagnosis from the blood panel, and damage visible in the subsequent endoscope. smile.gif My husband, however, had all of the classic symptoms and had a negative blood result and negative biopsy. If memory serves me, his IGA number was low.

He decided to spring for the Enterolab stool test, where the antibodies were clearly seen - - a lot of them. There was also a large percentage of fat present in the stool, again indicative of malabsorption issues.

DH went gluten-free right away, and all of his symptoms disappeared within a month or so. He's a new guy. smile.gif

Emily, your husband's response to the diet and the stool test are exactly the answer I was looking for! Did he also have the gene tests? If so, how did he do on that one?

elye Community Regular
Emily, your husband's response to the diet and the stool test are exactly the answer I was looking for! Did he also have the gene tests? If so, how did he do on that one?

Nope, he did not have any genetic testing done. His brother was diagnosed with a positive blood panel about three years ago. We're certain it's on their mom's side - - she has had symptoms all of her life, but will probably always eat gluten. :(

countrysnow Newbie
I am wondering whether the stool test done by enterolab could show antibodies that were missed by the regular blood test. I've had tests for celiac before - blood test at the GI's office, home blood test (Biocard), upper GI endoscopy, coloscopy, and finally the camera pill. All was negative for celiac disease. The only thing that was found was an inflammation of the colon (which my doc didn't even tell me, I only found out yesterday when I was reviewing my file, at least he did write it down).

Anyways, the curious thing about the blood test was that my IgA levels were very low (10 whereas the normal range is 70-400). I know this can affect the acuracy of the results. I'm thinking about doing the Enterolab stool test. My question is, though, would my low IgA cause a false negative? I don't want to waste $$$ on a test that may not be valid for me.

I'm also undergoing a gene panel testing, hopefully I will get the results soon. However, I'm really scared that all the tests will be negative. I would love to have some proof that it's not just in my head and I should stick to the diet. Also, it would help me decide if I need to avoid just wheat or actually gluten. I do feel much better when I avoid wheat but I'd like to know how strict with the diet I need to be. Avoiding wheat only is definitely much easier.

I'm actually a bit jealous of people on here who got dx by the "gold standard", went on the diet and got better. My whole life I've been told "it's IBS, eat more fiber and stop worrying about it". I'm just sick of doctors and "professionals" who don't get it.

Sorry for typos, I'm using my iphone while waiting in a doctor's office (orthopedist).

I had a negative blood test and decided to WASTE my money on enterolab, it also came back negative. I had a biopsy this past monday after going on a gluten challenge for two weeks. The doc said it looks like celiac, we have to wait for biopsy results to make it official. So upset I wasted the money with enterolab!!!!!

Amyleigh0007 Enthusiast

My blood test was negative but I went gluten free anyway. After one year I decided I had to know more. I knew biopsy and another blood test were out of the question so I did gene testing through enterolab. It was a good investment. My results showed I have one Celiac gene and one gluten sensitivity gene. I showed the results to my doctor who said he felt comfortable diagnosing me with Celiac based on my positive response to the diet and the gene results.

pchick Rookie
Anyways, the curious thing about the blood test was that my IgA levels were very low (10 whereas the normal range is 70-400). I know this can affect the acuracy of the results. I'm thinking about doing the Enterolab stool test.

Hi ~ I'm trying hard to figure out what's wrong with me, and what you are describing is sounding too familiar. I was "diagnosed" gluten intolerant... then did some research and now I want to know what exactly that means. I don't have $$ for biopsy to know if I have celiacs... but that doesn't matter to me as much as a mis-diagnosis.

I just got copies of my lab work from my naturopath, and he said I was gluten intolerant since birth and I should avoid gluten for life. But when I look at the actual lab results ~ the F14 Giladin SIgA tested negative 7. That just doesn't sound right.

My labs were as follows:

CS1: +3 candida, +1 saprophytic fungi

GP2: no parasites

MB2 Total intestinal SIgA: <11 (normal range is 400-880)

MB3 Intestinal lysozyme: 4 (normal is 6)

MB4 Alph Anti-Chymotrypsin: <14 (normal is <60)

FG1 Chymotrypsin: <3 (normal is >9)

no allergy to milk, soy, egg

F14 Gliadin Ab SIgA: 7 negative

I feel 100 times better on a grain free /sugar free diet, but I want to make sure I'm not overlooking something... and I'd like to know if anyone else had low chymotrypsin levels and what that means for you. I just want to make sure this is the right diagnosis... I don't want to end up with pancreatic problems (or maybe I have them already :huh: )

Korwyn Explorer
Hi ~ I'm trying hard to figure out what's wrong with me, and what you are describing is sounding too familiar. I was "diagnosed" gluten intolerant... then did some research and now I want to know what exactly that means. I don't have $$ for biopsy to know if I have celiacs... but that doesn't matter to me as much as a mis-diagnosis.

I just got copies of my lab work from my naturopath, and he said I was gluten intolerant since birth and I should avoid gluten for life. But when I look at the actual lab results ~ the F14 Giladin SIgA tested negative 7. That just doesn't sound right.

My labs were as follows:

CS1: +3 candida, +1 saprophytic fungi

GP2: no parasites

MB2 Total intestinal SIgA: <11 (normal range is 400-880)

MB3 Intestinal lysozyme: 4 (normal is 6)

MB4 Alph Anti-Chymotrypsin: <14 (normal is <60)

FG1 Chymotrypsin: <3 (normal is >9)

no allergy to milk, soy, egg

F14 Gliadin Ab SIgA: 7 negative

I feel 100 times better on a grain free /sugar free diet, but I want to make sure I'm not overlooking something... and I'd like to know if anyone else had low chymotrypsin levels and what that means for you. I just want to make sure this is the right diagnosis... I don't want to end up with pancreatic problems (or maybe I have them already :huh: )

I may be reading those incorrectly, but it appears as if your total serum IgA is extremely low which probably means you are IgA deficient (not uncommon for celiac disease - unusual but not extremely rare according to the research I've read). This would mean that your gliadin IgA will never register a positive test even though you are having a positive dietary response to a gluten-free diet.

pchick Rookie

Thanks Korwyn!

That is great information. I've been trying to decide if I should go in for a biopsy... but I don't have insurance ~ and if it comes up negative I would be a little upset for having spent so much money. And it sounds like having low serum IgA could affect the outcome. Plus dealing with it is the same... have to avoid gluten.

I've been searching for answers for about 12 years... reading these posts here make me feel I'm in the right neighborhood. I just wish this all would be easier to diagnose and understand.

nora-n Rookie

Yes, if your total IgA is low, all the IgA type tests, including enterolab, will register low too. But the fat malabsorption test form enterolab will be high, maybe that is why they add it in, to catch the IgA deficient people.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,168
    • Most Online (within 30 mins)
      7,748

    watsonjennifer12
    Newest Member
    watsonjennifer12
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • DAR girl
      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
    • Scott Adams
      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
    • Scott Adams
      PS - I think you meant this site, but I don't believe it has been updated in years: http://glutenfreedrugs.com/ so it is best to use: You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
×
×
  • Create New...