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Has Your Doctor Taken Enterolab Results Seriously?

JennyC

By JennyC
in Doctors

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JennyC Enthusiast
JennyC
Posted

I'm in the process of getting a second opinion for my 3 yr old son. He had positive blood work (tTG), and an outstanding dietary response to the gluten-free diet. The 1st pediatric gastro. wouldn't diagnose him with celiac unless he does a biopsy and it comes back positive. I can't put him back on gluten :( . I'm just not willing to loose the progress he's made thus far. He's gaining 3 lbs in one month! I came across Enterolab postings here and have contacted them. According to them he can remain gluten-free and still get good results from Enterolab. I know that many have given up on doctors, and enterolab functions to confirm or reject diagnosis in those cases. I would like to have an official diagnosis for my son so that he can have appropriate care. I'm wondering if I take Enterolab results to a future gastro appointment, if I'm likely to get anywhere?

I'm a little sketchy about Enterolab because he has yet to publish his work, and the testing is VERY cheap compared to other facilities. The whole celiac panel and gene test is around $370. That's how much I owe on his blood work!

As always, all input is really appreciated. I want want to do the best I can for my son.

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CarlaB Enthusiast
CarlaB
Posted

You already have a positive ttg and dietary response so you know he's gluten intolerant, you just don't know if he has celiac. Enterolab cannot tell you if he has celiac as they test only for gluten intolerance.

You can find out from Enterolab if he has the celiac gene. Keep in mind, Dr. Fine says that vitually everyone has gluten intolerant genes, so the benefit of the test is to find out if he has a celiac gene. That still won't give you a diagnosis, however.

GI's do not take the Enterolab results as diagnosis for celiac. Some will accept them for a gluten intolerance diagnosis, some won't. It doesn't really matter ... if your son is doing better gluten-free, then just keep him that way. :)

So, in my opinion, in your case, I don't think the test is worth it.

UNCHeel Rookie
UNCHeel
Posted
I'm in the process of getting a second opinion for my 3 yr old son. He had positive blood work (tTG), and an outstanding dietary response to the gluten-free diet. The 1st pediatric gastro. wouldn't diagnose him with celiac unless he does a biopsy and it comes back positive. I can't put him back on gluten :( . I'm just not willing to loose the progress he's made thus far. He's gaining 3 lbs in one month! I came across Enterolab postings here and have contacted them. According to them he can remain gluten-free and still get good results from Enterolab. I know that many have given up on doctors, and enterolab functions to confirm or reject diagnosis in those cases. I would like to have an official diagnosis for my son so that he can have appropriate care. I'm wondering if I take Enterolab results to a future gastro appointment, if I'm likely to get anywhere?

I'm a little sketchy about Enterolab because he has yet to publish his work, and the testing is VERY cheap compared to other facilities. The whole celiac panel and gene test is around $370. That's how much I owe on his blood work!

As always, all input is really appreciated. I want want to do the best I can for my son.

UNCHeel Rookie
UNCHeel
Posted

Sorry...that didn't go through. A firm diagnosis may be necessary however for insurance purposes...just a thought.

mommida Enthusiast
mommida
Posted

Some people are saying that a Celiac diagnoses has caused them to pay a higher health insurance and life insurance premium. :ph34r:

I have no problem keeping my kids gluten free with a probable celiac disease diagnoses.

School doesn't have a problem with letting them stay gluten free either. (Anything that will keep a child from vomiting or having uncontrolled "D" at school is a good thing.)

L.

Nantzie Collaborator
Nantzie
Posted

I've noticed quite a few people here have gotten an official diagnosis based on positive blood work alone. I think it has to do with how much the doctor knows about celiac.

My kids' pediatrician took the Enterolab results seriously. He gave me a referral to the ped GI just based on that. But then again, the best celiac ped GI in the whole area works in the same office, so he's just more knowledgable about the intracacies of celiac that the average pediatrician, I'm sure.

In a way, we're lucky that there are no prescriptions necessary for this condition. Because it's controlled by food, no matter if you have a diagnosis or not, you are able to treat it no matter what your doctor may believe about it. If the only way to control this was a prescription, a lot of us with negative or borderline test results would still be suffering.

I'm glad to hear your son is feeling better on the gluten-free diet.

Nancy

dlp252 Apprentice
dlp252
Posted

My GI does not agree with the stool testing, but also did not discount my dietary response to the diet. He performed an endoscopy (about 6 months after I went gluten free) and took biopsies, but as we both expected, they came back with no damage. Based on that, however, he said he could not officially diagnose me with Celiac. Still, he said dietary response is a valid indication of a gluten intolerance.

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Clark Bent as Stupor-Man Contributor
Clark Bent as Stupor-Man
Posted

I agree with carla... I don't think the test will be beneficial for you... many of us who choose to test with Enterolab were either gluten-free prior to blood work or never had positive blood work... that in itself will probably hold as much weight, if not more, than any Enterolab testing for most GI doctors... I think if you pursued some different GI doctors, the positive blood work and dietary response could probably get you an official diagnosis of celiac disease for your son... the gene test is really the only part of Enterolab's testing I see having any real value for your situation..

Ursa Major Collaborator
Ursa Major
Posted
I would like to have an official diagnosis for my son so that he can have appropriate care.

You don't need to have any diagnosis, official or not, to give your son appropriate care. You know that he is obviously gluten intolerant. An official diagnosis with a positive biopsy would just tell you that things have progressed to the point of completely destroyed villi.

Whether his villi are gone or not, the ONLY appropriate care is the gluten-free diet. You are already giving him that. NO GI will give him better care than that.

Keep up the good work, and don't worry about what doctors say. You don't need a doctor to give your son what he needs, which is keeping the food that makes him sick away from him, and feeding him the food that keeps him healthy.

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