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

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Hey all, after my many doctor trials and tribulations, I've decided to do the celiac panel and genetic testing kit from Enterolab. The gluten-free diet isn't entirely working for me at six weeks into it (I'd call it inconclusive at this point), so I'm not sure the doctors are wrong that I don't have celiac disase. But I figured this extra test is worth a try... small relative expense if my entire quality of life is changed.

What I'm wondering is this: since Enterolab is an independent lab whose business model seems to be getting word-of-mouth recommendations from celiac patients to other potential celiacs, it would be in their best interest to never find anyone negative for celiac. I know it's a longshot to ask here because someone who tested negative would probably not hang around this board for very long, but does anyone here know of an Enterolab result for celiac and/or gluten intolerance that came out negative? For anyone? I just want to make sure they're not making a living on telling people what they think they'd want to hear...

(Not that this entire experience is making me a horrible grumpy suspicious cynic or anything...) ;)

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Someone posted awhile back that they tested negative. I don't remember who it was or the month, but there was a posting.

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Someone posted awhile back that they tested negative. I don't remember who it was or the month, but there was a posting.

It was me - or at least one of them was me. I waited 8 months after going gluten-free to test, and it came back negative. Positive gene test, though, and some of my numbers were high enough in the negative range to make me suspect that they might have been positive if I had done it sooner. I definitely have a sensitivity to gluten and feel a zillion times better without it, so I think I was just lucky and stumbled onto a gluten-free diet before there was major damage. And this is a good thing! - although I was kind of disappointed not to get an "official" diagnosis.

Jeanne

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hi

just the other day while doing some celiac/gluten research online i stumbled across another forum (on another website) where a mother said her child was tested through enterolabs and it came back "normal". unfortunately i don't remember the forum or which test was done. i understand skepticism about enterolabs for the same reason but consider it a good option for myself when i can afford the tests. i would hope no one would pull such a big scam on people!

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I was wondering the very same thing. If it was legitimate or not. I have not seen a negative enterolab result since I have been here, but that doesn't mean there isn't one. Maybe you should ask them.

Monica

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Hey all, after my many doctor trials and tribulations, I've decided to do the celiac panel and genetic testing kit from Enterolab. The gluten-free diet isn't entirely working for me at six weeks into it (I'd call it inconclusive at this point), so I'm not sure the doctors are wrong that I don't have celiac disase. But I figured this extra test is worth a try... small relative expense if my entire quality of life is changed.

What I'm wondering is this: since Enterolab is an independent lab whose business model seems to be getting word-of-mouth recommendations from celiac patients to other potential celiacs, it would be in their best interest to never find anyone negative for celiac. I know it's a longshot to ask here because someone who tested negative would probably not hang around this board for very long, but does anyone here know of an Enterolab result for celiac and/or gluten intolerance that came out negative? For anyone? I just want to make sure they're not making a living on telling people what they think they'd want to hear...

(Not that this entire experience is making me a horrible grumpy suspicious cynic or anything...) ;)

I have had 6 of my family members tested. One was negative in all 4 tests, but carries 2 gluten sensitive genes. One only has 1 gs gene but has many problems and was positive. The others all have either 2 gs genes or a celiac disease gene and a gs gene. So all have gone Gluten-free Casein-free and are improving greatly. There definitely ARE Enterolab tests that show negative, and I thank the Lord for the stool tests. 3 of the 5 positives had tested negative in blood testing and were told they are okay, when we knew better. 2 more family members are getting tested soon. Good luck, Jan/Arkansas

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My son tested negative for gluten sensitivity through enterolab. He was just over one-year old at the time. He does carry one celiac gene, however. We had the full panel run on him.

My dd tested positive and has improved dramatically on the diet.

I was a skeptic too. I believe that the only reason you usually see posts from people who tested positive is because if they were negative they would search elsewhere for the causes of their problems.

Good luck. I hope you find your answers.

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Off at a tangent a bit: Did anyone go to Dr Fine's (Enterolab) convention in March? He was supposed to be publishing research data on his teting methods. The e-mail address I had for them is bouncing back so I would appreciate any info. I remember somone saying that they were going but can't remember who!

Thanks

Donna

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I was a skeptic too. I believe that the only reason you usually see posts from people who tested positive is because if they were negative they would search elsewhere for the causes of their problems.

Plus, you aren't likely to get tested in the first place if you didn't at least suspect you had a problem with gluten.

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daughter had elevated IgG levels to gluten so we to enterolabs to check fecal IgA. Came back in the acceptable range --> 6 (<10)

however now i'm wondering if she could be IgA deficient which will be another thread i'm going to write now....

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Thanks, everybody. I agree, you wouldn't go buying the test without a suspicion, and you wouldn't post here very often if it all came back negative, so I fully expected the majority of people here to test positive with Enterolab. I was just having a "suspicious moment." :)

I got the test in the mail today and plan to send it back tomorrow. Either way, I figure I win: either I know what's been causing pretty much everything that ails me and can fix it myself at last, or heck, at least I can drown my sorrows with a good Guinness and some pizza and I'm no worse off than when I started this journey.

I appreciate all the responses, though -- it's good to know that they're not just some group of teenagers with a storefront, xeroxing one page of test results to send back to everyone who pays them! (Now I'm having an "exaggeration moment"...) ;)

I'm doing the walk in San Diego on the 20th regardless of my results. You have an advocate in me either way! This disease WILL be a common household word by the time we're done!

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I was wondering the very same thing. If it was legitimate or not. I have not seen a negative enterolab result since I have been here, but that doesn't mean there isn't one. Maybe you should ask them.

Monica

I would suspect negatives tend to not post their results. But I have seen a few here and there.

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My godmother tested negative. My mom showed sensitivity, but no malabsorption. I showed the sensitivity and malabsorption. My doctor did the blood tests twice, and it indicated gluten intolerance.

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Hey all, after my many doctor trials and tribulations, I've decided to do the celiac panel and genetic testing kit from Enterolab. The gluten-free diet isn't entirely working for me at six weeks into it (I'd call it inconclusive at this point), so I'm not sure the doctors are wrong that I don't have celiac disase. But I figured this extra test is worth a try... small relative expense if my entire quality of life is changed.

What I'm wondering is this: since Enterolab is an independent lab whose business model seems to be getting word-of-mouth recommendations from celiac patients to other potential celiacs, it would be in their best interest to never find anyone negative for celiac. I know it's a longshot to ask here because someone who tested negative would probably not hang around this board for very long, but does anyone here know of an Enterolab result for celiac and/or gluten intolerance that came out negative? For anyone? I just want to make sure they're not making a living on telling people what they think they'd want to hear...

(Not that this entire experience is making me a horrible grumpy suspicious cynic or anything...) ;)

I had myself tested with Enterolab as kind of a control as I tested my son. I have been on a gluten free diet since childhood (thinking I was celiac, but now it turns out I don't have the gene. Don't know what to consider myself at this point). My antibody levels were all 4, while my sons were higher than 10 (10 being normal). However, they knew at Enterolab that I was on a gluten free diet. I have similar concerns about them since the medical community seems not to trust the results. It is very frustrating, isn't it?

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On the celiac panel, plus milk I only came back negative on the malabsorption, probably as I'd been gluten-free for about 8 months.

Now, I just sent the test kits back for my 2 sons last week, and I am really really really hoping (and praying) that they come back negative!!!

I'd love to report that negative result!

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Well, I got the response from Enterolab for both of my sons yesterday. I was so happy to read them!!!! Everything was negative, no active gluten reaction for either one of them!!! Now, they both inerited the HLA-DQ2 gene from me, and one gluten intolerant gene from mom so we need to monitor them, and test them periodically, BUT NO ACTIVE CELIAC!!! YEAH!!! :D:D:D:D:D:D:D:D:D:D:D

So, to answer the original question, I have just gotten back 2 negative tests from Enterolab, even with positive genetics.

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Now, they both inerited the HLA-DQ2 gene from me, and one gluten intolerant gene from mom so we need to monitor them, and test them periodically, BUT NO ACTIVE CELIAC!!! YEAH!!! :D:D:D:D:D:D:D:D:D:D:D

So, to answer the original question, I have just gotten back 2 negative tests from Enterolab, even with positive genetics.

Michael,

Are you going to have them go wheat free or gluten free at all or just monitor them from time to time? Just curious. We just sent out our tests to enterolab. No symtpoms of celiac, just my allergy test.

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Michael,

Are you going to have them go wheat free or gluten free at all or just monitor them from time to time? Just curious. We just sent out our tests to enterolab. No symptoms of celiac, just my allergy test.

My wife and I were just discussing that very subject last night. We are going to allow them to have gluten in their diet, and recheck them every 2-3 years..or sooner if they show symptoms. They already have no egg, no milk, and no nuts so why not let them indulge if they can!!

I will keep my home gluten free though. I'm sick enough off of gluten, we're not going to chance me getting accidentaly contaminated!

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I'm glad you got your answers and that they were what you wanted! :)

I posted on the post-testing board but not here... I did send away for the test and got my response the other day. It says I have a gluten intolerance but no malabsorbtion (I've been gluten-free for two months).

Up till now I've been skeptical that gluten intolerance was part of my work-up, but in the last week or so I all of a sudden started to feel better at last, so I'm going to try to figure out what's different and keep doing whatever I have to do to stay this way! :)

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We got our tests results back 1 1/2 weeks ago. My husband is negative but has 2 celiac genes. Myself, daughter and oldest son are positive, gluten intolerance. My son has 2 celiac genes and my daughter and I have 1 celiac gene and 1 gluten sensitivity. My husband and I also tested positive to soy intolerance. My oldest son has mild malabsorption. We got tested because of my allergy tests and wanted to know wether we had intolerances or not.

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I think the thing to consider is a two parter

1) do enterolab have an interest in providing positives ?

possibly

2) This is your health would you rather play safe

your decision ...

From what i read they are not some scam, perhaps they count questionable as positive, is that a bad thing?

Personally I don't think so ..

I would be more worried about conventional testing like a poorly taken or interpreted biopsy giving a false negative then a false or questionable positive.

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Thank you Cheryl for posting that. Very informative. I'm am happy to learn that they will be expanding to do allergy testing.

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