Jump to content
  • 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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Colleen H replied to Colleen H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Stomach burning and neuropathy

    2. - Juliane replied to Colleen H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Stomach burning and neuropathy

    3. - RMJ replied to Me,Sue's topic in Coping with Celiac Disease
      1

      Nausea

    4. - Colleen H posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Stomach burning and neuropathy


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,842
    • Most Online (within 30 mins)
      7,748

    Julia Duffee
    Newest Member
    Julia Duffee
    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

    • Colleen H
      Does anyone know if that includes scrambled eggs and healthy smart butter (,gluten free) I add a very tiny amount of margarine less than a teaspoon.  I did no't have any bread    It just seems like no matter what I eat my stomach and nerves over fire and here comes a host of horrible symptoms. My lower abdomen feels horrible, my right leg thigh muscle.. very odd. Jaw pain. Burning feet , joint pain , you name it  The anxiety just creeps up into brain fog. I don't think I could explain this to anyone who is unfamiliar.  Also,  I most likely will not remember posting this until I check it.  This is highly unusual for me because I have an excellent memory.  One weekend before I knew anything about celiac I lost an entire weekend from severe brain fog, confusion, pain, etc.  I honestly thought I was losing my mind. When I think back I recall eating a lot of PBJ sandwiches and turkey sandwiches.  Once again did not know about gluten.  I was just too sick to cook. Do people fast during attacks ?? It seems horrible to keep going through this. I hope I'm not causing my own problems... I wonder if I should fast because I'm not eating gluten .  Chicken ,  scrambled eggs no milk , canned carrots,  gluten free low sugar low fat Greek yogurt which I already posted about 😞 Any suggestions I am open... I am bedridden when this happens to me.  Thank you Celiac community. 🙏🏻❤️      
    • Juliane
      Yeah, that sounds super familiar. When inflammation levels are high — especially at the start of changing your diet — the body often develops a fructose and lactose intolerance. Unfortunately, the only thing that really helps is cutting out anything that isn’t lactose-free or that contains sugar. So basically, stick to meat, veggies, fish…
    • RMJ
      I have trouble with nausea. It often starts when I’m anxious about something (home repairs, sick dog) but continues long after the home is repaired or the dog is healthy again. When it happens I eat less and lose weight.  My gastroenterologist suggested ginger or peppermint tea. I don’t know if that will work or not because I haven't had the problem since she suggested it.
    • Colleen H
      Hello  I'm not sure what to think . Seems no matter what I do I get sick. I had some yogurt with only 2 grams of sugar and is labeled gluten free ...the strawberry version seemed to really set me off My jaw is burning as well as my stomach and my feet.  Horrible pain..plus acid reflux and nausea... sensitivity to touch pain. ..yikes !! I don't know if it's from the lactose in the yogurt or if I'm getting an ulcer  This condition can make you question yourself quite a bit.  Then if you are not sure the anxiety comes 😞 Does any of these symptoms sound familiar to anyone? The neuropathy is quite intense.  What do you eat or drink after this happens  Open to suggestions  Thank you 
    • sleuth
      Of course my son is on a 100% gluten free diet.  I wish his symptoms were not debilitating as there are right now.  He cannot work, even when a miniscule of cross contamination occurs.  It's not just GI distress, but intense fatigue, brain fog, depression, anxiety, insomnia, etc.  It's literally neurological inflammation.  Not to be taken lightly here.  We have sought out many other possible ways to cope during this window of time (8 months!!!!)  without success.   AN-PEP does not help and seems like studies on this are not well researched.  So, we are trying this out because research shows some promising results.  And, all participants showed no cravings afterwards, no signs of addiction.  The patch is different than the oral route such as smoking, vaping, gum, pouch, etc. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.