Enterolab Results After Several Months Gluten-free

[jnclelland]

Has anyone had Enterolab testing after 8 or more months gluten-free, and if so, what did you think of the results? I finally decided to do the test after 8 months wheat-free and 4 months completely gluten-free. They came back negative - except for the gene test, which said I have one celiac-specific gene and one gene for non-celiac gluten sensitivity. But I've had such a positive response to the diet that I'm certain SOMETHING is going on with gluten for me, and I have no intention of ever eating gluten again. The main reason I was looking for a positive test was to have some ammunition for getting my mother to get tested, and possibly my kids as well.

My best guess is that if I do, in fact, have celiac, it was in the fairly early stages of symptoms when I went gluten-free. My main symptom prior to going gluten-free was eczema on my right hand and face (gradually worsening over the previous 9 years or so). But when I went off gluten, I noticed other things as well: not only did my eczema clear up, but my digestion got noticeably better. In retrospect, I'd say that I had been having frequent (3 or 4 a day), somewhat looser than normal stools for a few months before that, but they didn't really register with me until I stopped eating gluten and they firmed up and got less frequent. And I felt like a big rock in my stomach just went away; I felt "lighter" if that makes any sense. I also think my anxiety level has decreased, and I just feel better all-around.

Anyway, I'm wondering if negative-but-not-so-far-from-the-cutoff results after so long off gluten are really definitively negative, especially with the positive gene test. Here are my numbers:

Fecal Antigliadin IgA 7.5 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 5 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score 293 Units (Normal Range <300 Units)

Fecal anti-casein (cow’s milk) IgA antibody 4 Units (Normal Range <10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0302

HLA-DQB1 Molecular analysis, Allele 2 0301

Serologic equivalent: HLA-DQ 3,3 (Subtype 8,7)

What do y'all think?

Jeanne

[Rachel--24]

It could be that you've been on the diet too long to show positive. It could be that you hadnt really suffered any damage yet....you caught it early enough. You may not have reached full blown-celiac but were smart to recognize a problem. I tested after 4 months gluten-free and was positive but I was extremely ill before the diet and was nowhere near healthy at the time of testing.

You can also email Dr. Fine at Enterolab and ask his opinion.

[jnclelland]

It could be that you've been on the diet too long to show positive. It could be that you hadnt really suffered any damage yet....you caught it early enough. You may not have reached full blown-celiac but were smart to recognize a problem. I tested after 4 months gluten-free and was positive but I was extremely ill before the diet and was nowhere near healthy at the time of testing.

You can also email Dr. Fine at Enterolab and ask his opinion.

That's a good idea! Do you have his email address? I can't find it on the Enterolab site, and the "contact us" form has a box that's about 10 x 10 characters, and I can't type anything legible in it.

Jeanne

[Rachel--24]

That's a good idea! Do you have his email address? I can't find it on the Enterolab site, and the "contact us" form has a box that's about 10 x 10 characters, and I can't type anything legible in it.

Jeanne

There must be a link on the website or something because I know alot of people from this site have sent them emails when they've had questions.

[teankerbell]

My doctor says that tests aren't always accurate. He said that if I feel better on a gluten-free than there's my answer.

[CMCM]

Has anyone had Enterolab testing after 8 or more months gluten-free, and if so, what did you think of the results? I finally decided to do the test after 8 months wheat-free and 4 months completely gluten-free. They came back negative - except for the gene test, which said I have one celiac-specific gene and one gene for non-celiac gluten sensitivity. But I've had such a positive response to the diet that I'm certain SOMETHING is going on with gluten for me, and I have no intention of ever eating gluten again. The main reason I was looking for a positive test was to have some ammunition for getting my mother to get tested, and possibly my kids as well.

My best guess is that if I do, in fact, have celiac, it was in the fairly early stages of symptoms when I went gluten-free. My main symptom prior to going gluten-free was eczema on my right hand and face (gradually worsening over the previous 9 years or so). But when I went off gluten, I noticed other things as well: not only did my eczema clear up, but my digestion got noticeably better. In retrospect, I'd say that I had been having frequent (3 or 4 a day), somewhat looser than normal stools for a few months before that, but they didn't really register with me until I stopped eating gluten and they firmed up and got less frequent. And I felt like a big rock in my stomach just went away; I felt "lighter" if that makes any sense. I also think my anxiety level has decreased, and I just feel better all-around.

Anyway, I'm wondering if negative-but-not-so-far-from-the-cutoff results after so long off gluten are really definitively negative, especially with the positive gene test. Here are my numbers:

Fecal Antigliadin IgA 7.5 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 5 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score 293 Units (Normal Range <300 Units)

Fecal anti-casein (cow’s milk) IgA antibody 4 Units (Normal Range <10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0302

HLA-DQB1 Molecular analysis, Allele 2 0301

Serologic equivalent: HLA-DQ 3,3 (Subtype 8,7)

What do y'all think?

Jeanne

The 0302 gene is one of the celiac genes. Therefore, at the very least you have a predisposition to celiac. I'm guess your 0301 gene is a gluten sensitive one. So you seem to have an even higher predisposition to something going on with gluten, either now or in the future.

Your antigliadinIgA was "normal" and so was the Transglutaminase IgA. However, while Enterolab says they have detected reactions from people up to a year after going gluten free, perhaps there is a possibility that for you and your test, your period of no gluten was just too long to show reactions. Your fecal fat score at 293 was pretty darn close to the 300 limit of normal. My score, for example, was 64 on that one, despite the fact that I had high scores on the other tests.

A strong response to a gluten free diet is not something to ignore. With your genes and your already present physical symptoms, you would be well served by a completely gluten free diet. Give it a lengthy trial and see what happens to your symptoms and see how you feel.

I'd also encourage you to write Phylllis at Enterolab....she is wonderful about explaining things regarding your test results. Did you get emailed results? Just reply to that email and your question will go to Phyllis. In case you need the address again, here it is:

enterolabresults@earthlink.net

[jnclelland]

A strong response to a gluten free diet is not something to ignore. With your genes and your already present physical symptoms, you would be well served by a completely gluten free diet. Give it a lengthy trial and see what happens to your symptoms and see how you feel.

I'd also encourage you to write Phylllis at Enterolab....she is wonderful about explaining things regarding your test results. Did you get emailed results? Just reply to that email and your question will go to Phyllis. In case you need the address again, here it is:

enterolabresults@earthlink.net

Thanks for the email address! My results were emailed to me, but from an email address that didn't accept replies. I managed to get in touch with Phyllis by using the contact form on the web site and asking if there was an email address where I could write to someone.

I definitely plan to stay on the gluten-free diet in any case. I never knew I could feel this good, and I don't miss gluten anywhere near enough to give up how I feel just to be able to eat it again. Not to mention for prevention of future problems: my grandmother has three separate conditions associated with gluten intolerance, so I wasn't at all surprised to get a positive result from the gene test. A firmer diagnosis would have been nice, but I'm perfectly happy to stay on the diet without one!

Jeanne