Enterolab Testing And Then What?

[wonkabar]

Hi! On Thursday, I ordered the Enterolab stool and gene testing kit for my 3 year old son. He, at the very least, has a gluten intolerance. He's shown classic symptoms of Celiac since he was about 18 months old. He's been on a gluten-free diet since March 8 with an awesome response to the diet both from a GI standpoint and behaviorally! We've only had one major screw-up since we started. We gave him quaker rice cake minis for a week........WOW, did that do a number on him (and us!!) He had bloodwork done just before going gluten-free, and it came back negative (igg,iga, ttg). Unfortunatley, the lab screwed up and forgot to take blood for the other two tests to complete the Celiac panel. What was more unfortunate is that my son was already on a gluten-free diet for a month before we were told about the error!! What were the other two tests that were missed, and what would they have indicated?? We weren't willing to put him (or us!!) through the awful experience of going back on gluten for this bloodwork. My ped has been very supportive of the diet, but isn't willing to Dx him with Celiac with negative lab results and no biopsy. We felt he was far too young to have that type of procedure especially since we'd seen such a positive dietary response. The ped was willing to call it a gluten intolerance...beggars can't be choosers!! We've already seen a ped GI who, btw was a complete jackass, told us that Zachary was "just fine" and that the changes in behavior when we removed gluten from his diet were "purely coincidental". Regardless of what any doctor tells us, we'd NEVER put him back on gluten...it's a nightmare for all involved! Although it's completely obvious that there's a major issue with gluten, I'm not sure what to do, if anything, or who to see, if anybody, with the results from Enterolab once I get them back. And lastly, I've read that stress or some type of trauma could trigger Celiac. Zachary was a 32 week preemie. I've often wondered if his arrival 8 weeks early and hospital stay in the NICU for the first 4 weeks of his life was enough stress/trauma to his system to trigger this immune response. Any thoughts on that?? I know this was a lot of stuff, but any input would be greatly appreciated! This board has been just wonderful...Thanks!!

--Kristy

[Nancym]

Next step is the gluten free diet. If you want to tell your doctor you had him tested elsewhere and got back positive results then do so. Chances are you'll get pooh-poohed if they here it is from Enterolab. You don't need anything more from the doctor on this issue, you've gotten the test and results from dietary changes and now it is time to move on!

[wonkabar]

Next step is the gluten free diet. If you want to tell your doctor you had him tested elsewhere and got back positive results then do so. Chances are you'll get pooh-poohed if they here it is from Enterolab. You don't need anything more from the doctor on this issue, you've gotten the test and results from dietary changes and now it is time to move on!

Thanks...I think!?!? My goal was to get an appropriate Dx for my son, if possible, before I just moved on..

Can anyone tell me what the two tests were that the lab forgot and what they would've indicated? (see above) Also, is there a problem with Enterolab? I've read many posts about it (most with positive test results but a couple about negative test results) and felt comfortable ordering the tests from them. I just got the test today and would like to send it back for a refund if there's a problem with Enterolab. Please advise! Thanks!

--Kristy

[wonkabar]

Also, is there a problem with Enterolab?? I've read many posts about it (most with positive test results but a couple about negative test results) and felt comfortable ordering the tests from them. I just got the test today and would like to send it back for a refund if there's a problem with Enterolab. Please advise! Thanks!

--Kristy

Can someone pleasssseeee give me some feedback about Enterolab?? I don't want to foolishly spend $400 on a test from a company that may not be reputable. Why might the doctors frown upon the results from them?? Thanks!!

--Kristy

[Nancym]

We weren't willing to put him (or us!!) through the awful experience of going back on gluten for this bloodwork.

That pretty much says it all.

You aren't going to get a clear diagnosis from blood tests unless he is eating gluten and has been for a good while. Even then, there are still a lot of people that respond wonderfully to a gluten-free diet but don't test positive. So what does this blood test do for you? If he didn't respond to the diet and he tested negative, then that would probably tell you the issue is something else.

If you're asking, will your doctor accept test results from Enterolab my question is, why does it matter? Ultimately the parents are in charge of their kids health, at least early on. You've already observed his improvement on a gluten-free diet. If your doctor can't accept that result he probably won't accept anything except the blood test results and an intestinal biopsy. He doesn't trust your observations and your sons results with dietary changes then that's the kind of doctor you've got. Mine was perfectly happy to take my own gluten-free diet results and Enterolab's testing seriously. I got pretty lucky.

Enterolab isn't without controversy but I think that is because his testing is different from what they've used for the last 50 years and the 13 minutes in med school they talked about celiac disease, they didn't mention Dr. Fine's research. Go look at Dr. Fine's CV online and compare it to your doctors. It might help you decide who is more qualified with your son's health.

You can get results from the Enterolab testing as long as he hasn't been gluten-free for more than something like 8 months, but check the Enterolab site.

Anyway, I don't think this is the answer you wanted but perhaps they are things you might want to consider before returning the Enterolab test.

[wonkabar]

THANK YOU for responding!! I'm not at all put off by your answer. My doctor has been very supportive of the gluten-free diet and the results I've reported to him. His spin on it is "if it's not broken, don't fix it!"...if my son is doing so well on the diet keep him on it. He also feels that the anecdotal information is important despite the fact that he had neg lab results. Clearly my son has some issue with gluten. The ped is comfortable calling it a Gluten Intolerance at the moment. I don't know how he feels about Enterolab, but I do know that he'd absolutely take the time to review the results and talk to me about it...good, bad or indifferent. He's not willing to Dx my son with Celiac, and we're okay with that. My ped is great, but he's not a ped GI and he doesn't pretend to be.

I was so excited to get the test kits and was ready to start collecting the samples for my son's test yesterday. I just got thrown off when you said they'd probably "pooh-pooh" them. I thought that, perhaps, there was a problem with the legitamacy of Enterolab. I didn't want to get screwed out of $400. There's controversy with anything that's new or goes against the grain. I'm okay with that...we'd just like some solid answers from somebody who knows about these issues. I could honestly care less if the doctors didn't accept these results. As I said earlier, we'd NEVER put him back on gluten regardless of what ANY medical professional told us. We might not know all the scientific "stuff", but we certainly know our son better than anyone else! And we know he has problems with gluten. I'll be collecting his samples this weekend. Thanks again!

--Kristy

[Nancym]

Cool! Glad you feel better about that decision.

In reality I knew that I probably don't need to spend the $$'s to confirm what we really already knew, that includes Enterolab, but I justified with thinking that if I got a positive confirmation and genetic results I could pass that info along to my siblings and I might also find out about my status with milk products (a positive unforuntately).

So even though my family totally rejected the information I did find out that milk products were probably about 50% of my problem too, which was a worthwhile finding.

I'm a nerd so I read all Dr. Fine's research and really looked into the issue and he looked to me to be a guy who truly cares about the current terrible state of gluten intolerance diagnosis. I suspect that some day his technique will be widely adopted.

[CarlaB]

I had my testing done from Enterolab and was very happy with them. In fact, I just ordered the test for two of my kids. I think the reason so many people come out with positive results is due to the fact that most of us who use the lab are almost certain there is a problem, conventional testing let us down, so we turn to them. If the general public all got tested by them, I think we would see more negative results.

You mention collecting samples ... Enterolab only requires one sample from one bm.

[wonkabar]

You mention collecting samples ... Enterolab only requires one sample from one bm.

Zachary isn't potty trained yet...he's in total denial! The instructions said when you collect from a diaper it needs to be at least a 1/2 cup for the specimen. For what this test costs, I didn't want to "limit" the specimen I sent back.

Thanks for the input! I am POSITIVE my son has problems with gluten. I'd really like to know if it is infact Celiac Disease just to put a name to it as he gets older. (This may be wishful thinking right now, and I may just have to let a formal Dx go for the time being.) Although, I am treating him as such. He's on a strict gluten free diet and is now lactose free. The lactose seemed to effect his behavior, too. He was very fresh while on regular milk. The only thing I'm not currently doing is using dedicated cookware and cooking utensils. I use HOT water and put everything (except the Calphalon) in the dishwasher. I read earlier that you shouldn't use wooden spoons so I did stop doing that. I am lining things with parchment or aluminum foil, not "double dipping" into containers with utensils, etc. Any other "lifestyle suggestions" are always appreciated; this is one big learning process!!

[Nancym]

Presumably he got the genes for the disorder from possibly you and your husband (one or both) so the entire family might want to adopt a gluten-free diet. It could improve everyone's health and your kid won't grow up feeling so isolated by being the odd one out. Of course, you'll know the genetic thing soon if you ordered it from Enterolab.