Need Enterolab Help - Test Was Negative? Newbie.

[luciddream928]

Hi all, thanks so much for your insights and contributions. I'm a new member and have read many of your postings on my journey through figuring out what my symptoms are all about. I thought it was gluten sensitivity so I took the tests through Enterolab. I took the Gluten Sensitivity Panel Complete (without the genetic test). I'm so totally confused now, I'm not sure where I'm at. I've found the gluten free diet to be the only thing that works to get rid of my stomach pain, abdominal cramps, chronic diarrhea, etc.... and the test came back negative. Some months ago I thought it was just wheat that was my problem, but my symptoms returned - after more research I found the gluten-free community resources and thought I'd give that a shot. Here are my results. Can anyone tell me what you think, or have any of you had a similar experience?

Final Laboratory Report

Date: 9/9/2008

Name: Z, Rachel

Gluten sensitivity Stool Panel Complete

Fecal Antigliadin IgA 8 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 6 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score 291 Units (Normal Range <300 Units)

Interpretation of Fecal Antigliadin IgA: Intestinal antigliadin IgA antibody was below the upper limit of normal, and hence there is no direct evidence of active gluten sensitivity from this test. However, because 1 in 500 people cannot make IgA at all, and rarely, and some people can still have clinically significant reactions to a food antigen despite the lack of a significant antibody reaction (because the reactions primarily involve T cells), if you have a syndrome or symptoms known to be associated with gluten sensitivity, a gluten-free diet may help you despite a negative test. If you have no syndrome or symptoms associated with gluten sensitivity, you can follow a gluten-containing healthy diet and retest in 3-5 years; or you may opt to go gluten-free as a purely preventive measure.

Interpretation of Fecal Antitissue Transglutaminase IgA: The level of intestinal IgA antibodies to the human enzyme tissue transglutaminase was below the upper limit of normal, and hence, there is no evidence of a gluten-induced autoimmune reaction.

Interpretation of Quantitative Microscopic Fecal Fat Score: Provided that dietary fat is being ingested, a fecal fat score less than 300 indicates there is no malabsorbed dietary fat in stool indicating that digestion and absorption of nutrients is currently normal.

For more information about result interpretation, please see Open Original Shared Link

Stool Analysis performed by: Frederick Ogunji, Ph.D., EnteroLab

Molecular Gene Analysis performed by: American Red Cross

Interpretation of all results by: Kenneth D. Fine, M.D., EnteroLab

[Amyleigh0007]

Welcome to the false negative club! I'm not sure about the accuracy of Enterolab, but bloodtests for Celiac are wrong often (false negatives). I would say that if the diet works for you then follow it. If you eliminate gluten and you feel better then that tells you that you have a problem with gluten (according to my very wise allergist). Good luck!

[ShayFL]

The first time I tested with Enterolab I was negative too. Think about it, if 10 is the cut off range...doesnt 8 seem kind of high?

I learned with my thyroid that "in range" didnt mean "symptom free".

You have your answer...the gluten-free diet.

Rejoice in this and stay the course.

[fedora]

hi,

did you have the blood work done? It doesn't sound like it. One thing they test for when doing the blood work is your total IGA antibody levels. It they are deficient they run the tests with IGG antibodies.

Enterolab tests for IGA only. If you are deficient you do not make the IGA antibodies. But some people are low and do not have as high of levels of antibodies.

Your fat absorption score is almost in the malabsorption range.

I know it is frustrating. The same thing happened to my daughter(only 7). Her antigliadin was 9 and her fat absorption was 288. The nurse said based on those close scores AND she had a lower total IGA score(not deficient) she may be having a reaction to gluten. I put her on the gluten free diet and she is FINALLY growing.

good luck

[mftnchn]

Yes, I think that it could be that your immune system is repressed and not showing up the reaction, but with your dietary response so clear it makes sense to stay gluten-free.

Do your symptoms totally clear with gluten-free? The reason I ask is that there seem to be people who have gluten sensitivity secondary to another issue, because something else has caused a leaky gut, so the gluten has leaked out and the body has started to get an allergic response to it. One example of this is CarlaB whose gluten sensitivity totally cleared after treating lyme disease. (She also doesn't have the genes for celiac).

[luciddream928]

Hahaha... thank you for the laugh Amy. I got those results and wanted to jump out a window in frustration.... I mistakenly thought "False negatives" only happen with the blood test, because I have heard of everyone testing positive through Enterolab and being clear about it.

Welcome to the false negative club! I'm not sure about the accuracy of Enterolab, but bloodtests for Celiac are wrong often (false negatives). I would say that if the diet works for you then follow it. If you eliminate gluten and you feel better then that tells you that you have a problem with gluten (according to my very wise allergist). Good luck!

[luciddream928]

Hi Fedora,

No I did not have the bloodwork done in the traditional sense. I took the Biocard Home Celiac Test just to screen it at first, but there were two problems with this: 1. I was on a gluten free diet for a few weeks, and 2. I'm not sure which it tested for - IGA or IGG.

I am a student with all of my money going to my naturopath and gluten free food in an attempt to gain some weight and feel healthy, so unfortunately I can't afford the "real" test. I've been going the "au natural" route in response to the hellish experiences I've read about with the medical testing. My aunt, a nurse practitioner, gave me a form to give to a lab to test for the antibodies, but I'm not sure if it tests for the IGA and IGG both. Plus I don't think I've had this long enough to test positive with the bloodwork (I'm 28 and have had symptoms for about 5 years).

I called Enterolab to question the results, and she said because my fat score was so close to positive, then the next step might be to get the genetic test, which I did. That will help me understand if it's genetic and I carry the markers, then I know it's gluten, and if not, then maybe something secondary as was the case with CarlaB.

This is tough. I feel like I'm going crazy but the lesson in it is to follow my gut (HA! no pun intended) because it seems that my intuition is better than any dr. I've seen or test I've taken. My naturopath (a kinesiologist) seems to think that the gluten sensitivity is not genetic. Her take on it is that my beliefs/traumas/emotions triggered a response in my body that may be able to be reversed. She's helped me in the past, but something tells me this is different. Not sure what I think of her philosophy yet.

A big "THANK YOU" to everyone who is responding. It feels good to have feedback with navigating this new land....

[luciddream928]

The first time I tested with Enterolab I was negative too. Think about it, if 10 is the cut off range...doesnt 8 seem kind of high?

Yes I thought that same thing... if 10 is the cutoff, then what does 8 mean? In a few years it will be higher? Interpreting test results is difficult in the sense that it is a "snapshot" of what is happening in a moment in time. Not sure what the 8 means being so close to 10. I'm a budding therapist, not doctor... I never deal with numbers!

[luciddream928]

Yes, I think that it could be that your immune system is repressed and not showing up the reaction, but with your dietary response so clear it makes sense to stay gluten-free.

That is how I'm operating at the moment, not going back just yet. I also considered my family history. 5 out of 8 of my great-grandmother's siblings had colon cancer, as did my grandmother, and now my mother has all of the same symptoms I do. I'd rather not set the stage for that, especially if I have an inkling that something is wrong.

[mftnchn]

There are some very specific cancers that are closely related to celiac. You might do a check for those, and then inquire about the specific cancers in your family. Could help.

With genes, just remember that there are still celiacs without the typical genotype. If you do have a common gluten sensitivity or celiac gene, it does help paint a clearer picture at this point.

[home-based-mom]

I am a student with all of my money going to my naturopath and gluten free food in an attempt to gain some weight and feel healthy, so unfortunately I can't afford the "real" test.

Food that is naturally gluten free such as fresh and frozen fruits and produce is actually less expensive than processed foods. You do not need gluten free replacements.

My naturopath (a kinesiologist) seems to think that the gluten sensitivity is not genetic. Her take on it is that my beliefs/traumas/emotions triggered a response in my body that may be able to be reversed. She's helped me in the past, but something tells me this is different. Not sure what I think of her philosophy yet.

Since you are not sure what to think of her philosophy yet let me help you out. If your gluten sensitivity is caused by celiac and not something else (leaky gut, Lyme, parasites, metal toxicity to name a few) then it is genetic and cannot be reversed. Listen to whatever the "something" is that is telling you this is different.

[ShayFL]

Naturopaths are often good people who mean well and do help a lot of folks. But like anyone else, they can be wrong.

Go with your intuition. It is there for a reason.