Another Enterolab Question.

[mom2fiveblueyebabes]

I am seriously considering Enterolab to test my 21 month old. He is irritable, constantly hungry and eats as much as me, he looks like a starving child, he also has dark circles under his eyes. He was does not experience diarrhea or constipation. He was diagnosed w/ FTT around 13 months. He only weighs 20.5 pounds and has only gained a few ounces since his 15 month visit. He has had numerous blood test (CF, Thyroid, Celiac panel), bone age and currently a stool test. All his test so far have come back negative.

I have been waiting on the results from the stool test for 3 weeks. I keep calling, leaving messages, nothing. I have a follow up appt. w/ the pediatric GI on Friday. When he gave me the order, he gave me one small specimen jar. No explanation or real instructions.. All he told me was that he was seeing if he is digesting his food. I called the lab and told them what tests he ordered. They told me that he had ordered 3 different tests. 1 frozen, 1 refrigerated and 1 24 - 72 hour collection. The lab explained to me what to do. I was told that the test would take 7 - 10 days.

How can I know if he has ordered stool tests for gluten sensitivity? Why can't the hospitals perform the same tests as Enterolab? Has anyone had their pediatrician go along w/ Enterolab's results? Has anyone been reimbursed through their medical insurance for the cost? If so, how did you do it?

I am just getting completely frustrated. I am tired of the run around, clueless doctors and not knowing what if anything is wrong with my baby. (But, does my description of him above sound like a healthy 21 month old?) I just want some answers and for my son to start gaining weight.

Thank you for your replies!.

[celiacgirls]

My daughter was tested for the first time when she was about 1 year old with the blood and stool tests at the pedi GI's office. It was negative. When she was older, she complained about her tummy hurting, so she was tested again several times. The last time was when she was 7. All negative. Finally, when she was 8, I tested her with Enterolab and it was positive. I called the GI doctor she had been seeing and the nurse said she didn't think it was necessary for her to be gluten-free, that the stool tests online were considered inaccurate. However, my daughter is better on the diet and agrees she needs to be gluten free. I have not taken her back to the doctor because I think we have our answer and we don't really need her permission to do the diet.

Since they have already done the tests, you could try the diet and see if he gets better.

I think some people have been reimbursed by insurance for Enterolab. I didn't even try because I figured they would reimburse only a small portion of it and I really don't want to have the celiac or gluten intolerance dx on our insurance.

[Izak's Mom]

Hi -

Check out my thread about Enterolab Open Original Shared Link - you might also want to browse around in that section.

Here's the recap of what's in there: Dr. Fine (the Enterolab guy) has a patent on his methods of testing, so your hospital/doctor can't perform the same tests (that was one of my first questions, too). I have BC/BS and called to see if the tests would be covered. I was told that all the CPT codes used by Enterolab would be covered 100% if Enterolab was in my network, but they're not, so I'd have to pay my deductible and there'd be partial coverage (80% or something). I'm kinda broked these days, so less than 100% doesn't work for me - so I figured it my ped. orders the tests from Enterolab, it'll be through our PCP and then be in the network and thus be fully covered. So I talked to my son's ped. yesterday and she was all for it, although she did suggest that rather than wait for a collection kit to be mailed to me, I could go to the hospital (where we go for regular doc stuff) and have the lab there collect the specimen to be sent to Enterolab. She (ped.) said she'd call Enterolab to find out what they needed in terms of specimen, but I'm going to call today too to make sure we're all on the same page. So that's where I'm at.

Good luck with the testing - have you tried starting a gluten-free diet? For me, the best thing about Enterolab is that you don't have to be eating gluten to get an accurate result. No way would I give my son gluten at this point - regardless of what the tests might say. His dietary response has been overwhelmingly positive; the Enterolab tests are really just to satisfy my own curiosity & see just how sensitive he is.

[mom2fiveblueyebabes]

Thank you both so much for your information. I am going to contact my insurance company tomorrow. I am keeping my fingers crossed. I am going to take some Enterolab information with me to our appointment on Friday with the GI doc.

No, I have not started him on the diet yet. I have been considering it. I guess I just do not know where to begin and I don't have the "support" from others . I just had a talk with my mom and she feels that since he does not have diarrhea and constipation, like the two people she knows, then he can't possibly have it. I tried to explain to her that it does not matter. He displays other symptoms. I just don't know what to do anymore.

Thank you again.

[Izak's Mom]

No, I have not started him on the diet yet. I have been considering it. I guess I just do not know where to begin and I don't have the "support" from others . I just had a talk with my mom and she feels that since he does not have diarrhea and constipation, like the two people she knows, then he can't possibly have it. I tried to explain to her that it does not matter. He displays other symptoms. I just don't know what to do anymore.

I know how difficult it is to start & stick to the diet, especially when you have family and friends giving you the wiggly eyebrow about it. But the thing is, if you try it and see a positive response, no test in the world can change that fact. And if you try it and it doesn't help, then no harm done either - it's not like it's such a strict regimen that it's going to have adverse effects.

You should check out some of the threads talking about food options for the little guys...when I started, the first thing I did was buy some gluten-free pasta, bread and snack stuff. My son didn't even notice the difference, and pretty much inhales whatever I make him. There are lots of great brands of gluten-free snack foods for kids, and I'm going to go out on a limb and say it's not as hard as you think it might be to stick to the diet. As for well-meaning family & friends who may think you're nuts...dealing with them will likely be harder than dealing with the diet. But you're his mom and despite what anyone else might think, YOU know him the best. Good luck with whatever you choose to do and I hope your son turns into a happy healthy porkchop!