• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
0
jnclelland

Enterolab Results After Several Months Gluten-free

Rate this topic

Recommended Posts

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

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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.

Share this post


Link to post
Share on other sites
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

Share this post


Link to post
Share on other sites
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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites
Ads by Google:


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

Share this post


Link to post
Share on other sites
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

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      108,929
    • Total Posts
      943,564
  • Member Statistics

    • Total Members
      67,193
    • Most Online
      3,093

    Newest Member
    ddinidaho@gmail.com
    Joined
  • Popular Now

  • Topics

  • Posts

    • I’m 62 and have just now been tested for Celiac.  My Titer was negative, I have zero IGa and too much IGg (16) which is an indicator of intolerance at the very least and may indicate the need for another endoscopy. He also tested for EPI (exocrine pancreatic insufficiency) which was negative.  I just had a colonoscopy/endoscopy last year as a part of being diagnosed w/ Gastroparesis. I also have (among other things which I’m not sure are as relevant) - T2 Diabetes, Hashimotos Thyroiditis (late 30’s) Chronic Kidney Stones (since age 40), Osteoporosis (way before Menopause and not well controlled), and Gallbladder disease.(was removed) I’m discovering that all those I listed may be related in some way, and related to Celiac.  I haven’t seen the gastro doc for followup since the testing (obtained results from lab) so I’m not sure what he’s going to recommend.  Here’s where it gets scary... my daughter has many of the same things. She was just diagnosed with EDS (Ehlers-Danlos Syndrome) at 32.  She was diagnosed w/Glucose intolerance at 15, had her Gallbladder removed at 20, PCOS at 22, and Gluten intolerance at 30 (no testing, just her gastro’s recommendation). She’s been diagnosed w/Gastroparesis, POTS,  MAST Cell Activation Disorder, Peripheral Neuropathy, (lost use of her bladder and has a neuro stimulator) - all in the last year.  Too much coincidence for me.  This has to be all related. I keep reading more and more studies linking all these things (like EDS and Celiac) together. My daughters  geneticist is blown away by the multiple overlapping and co-morbid conditions we have and tells us it’s not uncommon. She also says research is expanding.  Sadly, the specialist docs seem baffled and can’t even begin to address our issues, and only help to manage the symptoms - sometimes. And every “Disease/Disorder” has a “diet” or protocol, and they are all at odds with each other - very frustrating.  I guess the moral of this story is to let others know that there’s a lot more to all this than meets the eye. Don’t let anyone tell you you’re fine if you have what seem to be strange unrelated symptoms. You’re not crazy. Keep fighting for understanding and knowledge. Be an advocate for yourself, you’re loved ones,  for us all.      
    • Nice to know that Disney makes an effort to take care of people with allergies or special diets (like gluten free!): https://publicaffairs.disneyland.com/walt-disney-parks-resorts-receives-honors-allergy-friendly-fare/
    • Wow, I also had pyloric stenosis that was misdiagnosed for some weeks as an infant (and almost died from it).  I also have Raynauld’s and I started following celiac diet, finding an immediate improvement of my symptoms.  I thought I was the only one that had all 3 of these diagnoses.   Interesting.
    • If you are lucky enough to travel in the Spanish-speaking world, just about anywhere you go, you will very likely run into a some version of chicken and rice, or ‘Arroz con Pollo’ as it appears on countless menus. This Cuban-style version relies on annatto oil to give it a red color. You can make your own annatto oil by putting achiote chili seeds in vegetable oil and heating it up for a few minutes over the stove. Cool and store. This version of chicken and rice is tasty, gluten-free and keeps well in the freezer. View the full article
    • I was diagnosed with celiac at the end of October. My DGP IgA was tested September 12th and was 127. I just got it retested and it was 135. I have been eating gluten free since I was diagnosed. I thought the numbers should be going down. How long does it usually take for the numbers to start dropping? Right now I feel like I must be getting cross contamination somewhere.
  • Upcoming Events