Accuracy Of Entrolab Test Results

[Joyous]

I have a 7 (almost 8) year old, and his dad (who I'm no longer with) will be very reluctant to have our son see a specialist and have tests done because he thinks I'm always trying to say that something is wrong with our son (something is wrong with our son) and he doesn't want to pay any more medical bills than he has to.

I'm thinking of bypassing him and just ordering the entrolab test, but I need to know how likely it is that he'll get a false negative (or positive, for that matter).

Also, his dad will be very reluctant to agree to a gluten free diet for our son unless there's proof (there are 5 people in his house and fixing special meals for one of them will be a great inconvenience, not to mention having to pack school lunches instead of ordering hot lunch). His girlfriend is a nurse... how likely is it that they'll dismiss the entrolab test results as being unprofessional or inaccurrate or something of the like? (That is, how does the "mainstream" medical community view these tests?)

I have a hunch this will go relatively smoothly and his dad will, after a bit of complaining, end up being very glad that we looked into this possibility because I truly believe that a gluten free diet would resolve most (if not all) of our son's problems (behavioral/mood, learning disabilities, sleeping issues, bedwetting, and he's also pretty thin). I just have to go about this the right way, and in doing so I need to know the value of the entrolab tests.

[CarlaB]

I would have him tested for celiac disease. Enterolab can only tell you whether he's reacting to gluten, not whether he has celiac. And, you are right, the nurse-girlfriend will dismiss Enterolab.

The blood tests for celiac are simple and should even be less expensive with insurance than Enterolab.

So far, we don't really know the accuracy of Enterolab. They've been promising for years to publish information about it, but haven't.

[Ursa Major]

In your case, I'd go for official testing before I'd go for Enterolab, for the very reasons you are worried about it. Only if the bloodwork and biopsy are negative would I go with Enterolab.

I do believe Enterolab is accurate. And no, not all people tested by them get a positive test result. I had my youngest daughter tested by them (she had negative blood work) and now that she is finally agreeing to be on the gluten-free diet she is feeling a lot better. She has a fairly high malabsorption score (816), which shows me that she does have intestinal damage. It just isn't bad enough to show up on blood work yet.

[Joyous]

The problem is that if I take him to the doctor, I have to talk to his dad about it first, and we'll end up splitting the cost (he has insurance but there's a high deductable). If I go through entrolab, I can have him tested without talking to his dad about it first, and then present him with the results and if he wants to have Travis go through blood testing before agreeing to a gluten free diet, then it will be his decision and he will feel better about the whole thing, I think.

Maybe I'll give him some information and see what he says. At this point though he'd dismiss it as me trying to find things that are wrong with our son (as if I want there to be something wrong and I'm just making stuff up) and taking him to the doctor over things that aren't even a problem.

[Ursa Major]

Okay, I see your point now. It sounds like a good idea then to test Travis with Enterolab first. Make sure you get their whole package, so you know what his genes are as well, and to see if he needs to be dairy free as well (very likely, at least for a few months) to get better.

If he has the 'official' celiac disease genes, official testing will be useful. But if he 'only' has gluten sensitive genes (just as bad, really, same treatment), he likely won't show up on blood tests, and possibly would have a negative biopsy as well.

His predominantly neurological symptoms point more towards the gluten sensitive genes, but not necessarily.

One of my grandsons had real emotional symptoms (crying for hours for the slightest thing and getting upset very easily), as well as joint pain and being frighteningly thin, despite eating a lot.

My daughter didn't bother with testing but put the whole family (herself and five children, her husband won't do it yet) on the gluten-free diet. Little Ethan (5) has had a miraculous improvement in a very short time. He is steadily gaining weight, and he is now no more emotional than any other normal kid.

So, what I am saying is, that even if the Enterolab results are positive and the other ones negative, the diet trial is the most valid test of them all. Unfortunately, you can't really put him on the gluten-free diet until he is done with all testing. Because, even though you don't have to be actively consuming gluten for Enterolab testing (it is valid for up to a year after eliminating gluten), official blood testing and biopsies will require him to be eating gluten.

[janelyb]

The problem is that if I take him to the doctor, I have to talk to his dad about it first, and we'll end up splitting the cost (he has insurance but there's a high deductable). If I go through entrolab, I can have him tested without talking to his dad about it first, and then present him with the results and if he wants to have Travis go through blood testing before agreeing to a gluten free diet, then it will be his decision and he will feel better about the whole thing, I think.

Maybe I'll give him some information and see what he says. At this point though he'd dismiss it as me trying to find things that are wrong with our son (as if I want there to be something wrong and I'm just making stuff up) and taking him to the doctor over things that aren't even a problem.

You can't take your son to his pediatrictian? Then ask the pedi to order the tests? I mean you are concerned about his health that would be a good enough reason IMO to see his doctor. You don't need to see a specialist to have a celiac panel blood test done.

I tested with enterolab but only because my sons tests were inconclusive and we were not getting anywhere with the doctor.

[Cath4k]

We went with Enterolab and all four of our dc came back gluten intolerant. Three of them are also casein intolerant. I can guarantee that their positive results are accurate, as evidenced by their improvement on the diet and their symptoms when they accidentally get glutened.

I felt panicky about getting them gluten free as quickly as possible due to their symptoms. Three of the kids went gluten free before they even provided their samples for Enterolab. My oldest is the only one that we did the gluten panel on (antigliadin, transglutaminase, malabsorption, casein, and genetic testing.) The other dc we only did gluten and casein tests. I would highly recommend that in your case you do the gluten panel if you go with Enterolab.

I am so glad we went with Enterolab because as we go through dietary/symptom ups and downs, we never have to doubt that they all must follow these restrictions - for the rest of their lives. We have also known for a fact that the one dc who is not casein intolerant does not have to go without dairy. It has been very helpful. We didn't test ourselves and although we feel sure that we both are gluten intolerant based on symptoms and response to diet, plus casein for me (dh hasn't tried to go without casein yet), we have those niggling doubts about whether or not we really HAVE to follow the diet, yet we are scared to truly challenge ourselves. We will test ourselves as soon as we have the extra cash (don't know when that will be with four special diet dc, LOL.)

I can tell you that we have followed up with a gastroenterologist with my oldest dd and he accepted the Enterolab results. He did do additional testing, but definitely accepted the results. He has diagnosed her Celiac (well, we haven't had the follow-up appt. yet but he told me he was going to diagnose her Celiac no matter what the results of his further testing.)

Additionally, our pediatrician accepted the Enterolab results, too.

I will not be doing additional testing with my other dc unless there is a medically justifiable reason like there was with my oldest dd. I don't even want blood drawn from the youngest two. My youngest dc has an appt. with his GI coming up soon and I will obviously discuss it with him, but I am NOT going to gluten challenge the little ones. I know everything would come back negative if I don't gluten challenge them because they have been gluten free for too long. I also am now totally reassured that Enterolab is legit and accepted by gastroenterologists who are up on the most current research and information.

I am sorry that it isn't easier to just partner with his dad in order to figure out what's up with your dc. If your ds's father is not open to doing the diet on trial because he doesn't really believe it will help, you will NEED the test results. Truly gluten free is hard (at least at first.)

Good luck,

Cathy