Experienced Enterolab Users: What Are The Possible Outcomes?

[ItchyMeredith]

Hi-

I understand that Enterolab cannot "diagnose" celiac- only gluten intolerance. Why exactly is that? I am a confirmed celiac and I am trying to figure out if my 3 year old son with negative blood work is as well. Can Enterolab help me figure this all out? Even if they say they cannot diagnose celiac- can I assume celiac if both the gene and the antibody test point in that direction?

This is what I have gathered by reading the site. Please correct me if I am wrong.

Possible Outcomes:

1) Positive Gene + Positive Gluten Intolerance = probably celiac

2) Positive Gene + Negative Gluten Intolerance = negative for celiac now/possible in the future.

3) Negative Gene + Positive Gluten Intolerance = not celiac but intolerant (still have to be gluten-free)

4) Negative Gene + Negative Gluten Intolerance= no gluten issues

Thanks for your help!

[mftnchn]

Dr. Fine hasn't published and so his work hasn't been confirmed and accepted by the medical community. The Ttg is the same test done on blood samples--and a positive there is seen as highly indicative of celiac.

On the other hand some folk here on the forum were positive by Enterolab but ultimately were not celiac--were gluten intolerant due to leaky gut caused by other illnesses.

So I see the gluten intolerance as a more general descriptive term, and the celiac as a specific disease diagnosis.

My doctor told me he has used Enterolab and finds it clinically very useful. He has sent many kids for biopsies and has not had even one come back positive. But Enterolab has picked up the gluten sensitivity and subsequent diet change has proved very helpful for many of his patients.

I think you've summarized the possibilities well. Just realize that #3 and perhaps even #1 might indicate gluten sensitivity because of another issue and not actually celiac or yet celiac.

My sense is that with your diagnosis, a positive gene, and positive dietary response that should be adequate to diagnose your child knowing the both blood and biopsy can be false negative. Do you need a more official diagnosis?

[ItchyMeredith]

I am just hoping to find a solid answer. Is that unrealistic?

I know that some of you parents of celiac kids understand. It is really hard to keep a 3 year old gluten-free. We did it for 2 months and it was a challenge whenever we were out with friends or at a playgroup or even at school. Don't get me wrong- I will do it if needed and-being gluten-free myself- I am ready to. I just don't want to put him through the diet if we don't need to. It is hard telling your child that he can't have something that ALL of his friends are having. I always plan ahead and bring safe snacks but a 3 year old never really wants what mommy brings. The "no" food is always more exciting. If I brought gluten-free cookies and his friends are eating Cheerios- the Cheerios are more enticing. It's challenging. If the gluten-free diet is not needed I don't want to go through years of struggle surrounding food.

On the other hand, I have already ordered the test because I also don't want to expose him to gluten if it is hurting him. I have talked to enough parents about the damage that can be caused in the years it takes to make a solid diagnosis.

To tell you the truth I didn

[Nancym]

Hi-

I understand that Enterolab cannot "diagnose" celiac- only gluten intolerance. Why exactly is that?

Because currently the definition of a celiac is someone with villious atrophy and you can only get that from an endoscopy and biopsy.

If you've talked to many folks, or read their stories, here you'll find that lots of them were not diagnosed as celiac, tests came up negative, but were extremely sick until they removed gluten from their diet. Then you'll find celiacs that have few symptoms that they're aware of yet they have positive tests.

Many of us believe that the tests are either inaccurate or the diagnosis is missing a lot of very sick people who can benefit from removing gluten from their diet. So right now the way things stand, there are no answers that are black and white and firm and no one disputes. Personally I think if you're looking for absolutes from medicine then you're barking up the wrong tree. There's too much that is unknown and too many variations between people.

I think the Enterolab test is pretty good because, unless you have an IgA deficiency, you at least *know* you're reacting to gluten in your intestines (or not).

And the ultimate test is the dietary one. If you're having symptoms and you stop eating gluten and they improve then you've answered a whole lot of questions.

[fedora]

hi,

I understand your need to know something more concrete. My daughter at 7 knows she wants some medical proof. I am sending out her enterolab samples today. Her tTg blood work was negative and the lab didn't check the anti-EMA or anti-gliadin antibodies. Annoying. It is harder with kids who haven't had enough damage done to be sick or are asymptomatic. we will not "know" if we are celiac with villi atrophy. But to me it doesn't matter. You "know" you have DH so if your kid does have gluten intolerance it is likely that they could develop celiac one day even if they don't have it now. Who would risk that. That is why I am adressing my daughters issues now. She has terrible dark circles under her eyes, delayed growth this year, cranky, and moody, and mouth sores.