Enterolab

[artlili]

My son is 4 and he was just tested for gluten intolerance. IgA came back with normal levels and TtG was negative. Also did sucrose test Friday but it will most likely be negative because it reproduced none of his symptoms (ruling out sucrose intolerance). One uncle of mine is on gluten-free diet with complete remission of all symptoms but all his test including biopsy were negative. I am considering testing with Enterolab before rejecting the celiac disease diagnosis. However there is no literature on the sensitivity or specificity of their test that I am aware of. I found no research at all on their stool testing procedure. Any information on the validity of the Enterolab procedure?

Lactaid milk and enzimes with dairy products has reduced my son's complaints of lower abdominal pain and it as reduced the frequency of his diarrhea episodes down to maybe 1/week. He gained 4 pounds in just a few weeks when we started the enzimes. However he still has tummy pain almost daily when he eats a variety of non-dairy food like some brand of hot-dog or chicken nuggets. He eats pastas and bread and cutting it just to try gluten-free diet would mean he would initially loose weight before adapting to new food and he has NO weight to loose just for fun. I am trying to have a diagnosis before implementing any change in his diet. His case seams pretty mild that's maybe why the TtG is negative or maybe his problem has nothing to do with celiac disease. He does not react specifically to wheat product. It may just be lactose intolerance but the GI specialist doubts it. I have not talk to the doc about Enterolab yet but I know what she will say...

It feels good to talk about it. So, what about Enterolab any good reference?

Liliane

[Nevadan]

I'm an adult male who recently discovered I have a sensitivity to glutein by doing my own gluten elimination test (after many doctors over the last 25 yrs failed to ever mention glutin sensitivity). I did 3 subsequent brief gluten challenges to convince myself. Being gluten free after my experiments, I didn't want another gluten challenge to prepare for a conventional blood test, so I opted for Enterolab. I shipped my samples two weeks ago so hope to see results within about a week. I too am concerned about their lack of peer review or independent means of verification, but after some web research I decided to go with them anyway. My main interest is in their malabsorption test and using it to establish a baseline so that after a few months I can retest to see if the gluten-free diet is helping.

Re your child and the love of pasta, as long as you are eating at home I've found "Mrs Leeper's" corn spaghetti (glutin and casein free) to be about as good as any wheat pasta I've eaten. I get this at our local Raley's supermarket. It's probably available at other stores or on the web. You might want to give it a try.

Good luck.

[gf4life]

I personally was gluten free before my children. I spent a few years trying to get the proper testing for myself through conventional means, but ended up going on and off the diet for testing (which at that point I did not know it would mess up my results). After testing negative for everything, but knowing that I felt better on the gluten-free diet, I had the testing done with Enterolab. I was able to get blood tests done on my kids when my results came back positive. They all came back inconclusive (positive for IGG antibodies only) but were referred to a pediatric GI. When the insurance refused to do the labs again with a more reliable lab I opted for Enterolab for them also. I had researched them for over a year and felt they were reliable. The pedi GI said he could not give them a diagnosis based on the tests, as he had no experience with Enterolabs, but he was willing to support me in putting them on the diet. They all had such a positive response to the diet that he is very happy for me to keep them on it. He is monitoring their progress.

The thing is that you have to make the decision for yourself. If you need an absolute concrete diagnosis from a doctor then Enterolab is not for you. If you need to know for yourself and don't care that some people/doctors still think Enterolab is bogus, then conscider using them. (by the way Dr. Fine is currently collecting data on his tests and the people who have used them in preparation to present all the "evidence" of the validity of his test methods and they are also doing research on the stool tests over in Europe) I was more concerned with myself. I know myself enough to know that I would never stick to the diet without positive results. I knew already that I had an intolerance to gluten, but I needed to prove it to myself. I also was not going to condemn my children to a diet that they might not need without proof. For us it was also a money issue. If the insurance wasn't going to pay and it was coming out of pocket, then Enterolab was cheaper than Promethius and I would get more complete testing (ie: antibodies for TTG and Endomysial, malabsorbtion, gene testing for primary Celiac and secondary gluten intolerance genes and also a milk sensitivity test) for about $450. Prometheus was going to be over $700 for the blood and gene test and they only run the gene test for the two primary Celiac genes DQ2 & DQ8. My sons have the secondary gluten intolerance genes and would have tested negative on the gene test with them. So for that I am glad that I went with Enterolab. They would still be on gluten and have digestive problems and growth problems, as well as all the other issues that go along with gluten...they are doing so well and have such bad reactions to accidental gluten ngestion that I do not question the results of their tests.

I wish you the best in your decision about testing. Just do what feels right for you.

God bless,

Mariann

[pixiegirl]

I did the full EntroLab testing but after I went gluten free and for me it was just to look at my genes, mostly. I have 2 main genes for celiac, so I know my daughter has at least one....

I did the doctor route too and my Dr. tested me for celiac (one single blood test and I'm not sure which one...) and he said, "no celiac you can eat gluten."

Well he was wrong... I went gluten free and all my symptoms cleared up. Every time I accidently ingest gluten I get sick right away and it lasts for ages... so thats really all the proof I need, I don't care if its gluten sensitivity, celiac, wheat allergy, all I know is that gluten makes me sick and I'm not eating it! The EntroLab tests just confirmed it for me but I already knew it!

Best to you,

Susan

[Guest barbara3675]

Let me confirm what the former people have said. My granddaughter, who is seven, has had celiac disease for six years now and her mom suggested that I get tested a year ago. The one blood test that the doctor chose to do came back negative but I chose to go gluten-free anyway and did the full panel Enterolab which came back positive and I do carry the gene. I no longer have tummy pains (in the process they said I should avoid milk products too), bloating, gas...you know the routine. I can now tolerate all processed milk products like cheese, yogart etc. I still use rice milk on my cereal and eat soy ice cream, though. You really need to do what you heart is telling you is the smartest thing to do. Eating gluten-free isn't as bad as you think it is and to keep yourself healthy for life should be the chosen option.

Stick with the grand people of this message board, most of them are so wise, kind and want to help you.

Barbara

[artlili]

Thanks to all of you for the comments. I read some more today and found a slide show on Enterolab.com (Open Original Shared Link). It presents some unpublished data and literature review. Very enlightening. I will talk with The GI doctor this week and ask her what she thinks of Enterolab. In any case I am pretty sure I will do it for my son and also for my 8 months old daughter. I just need to convince my husband who is a good gait keeper for our finances.

Liliane

[celiac3270]

Thanks to all of you for the comments. I read some more today and found a slide show on Enterolab.com (Open Original Shared Link). It presents some unpublished data and literature review. Very enlightening. I will talk with The GI doctor this week and ask her what she thinks of Enterolab. In any case I am pretty sure I will do it for my son and also for my 8 months old daughter. I just need to convince my husband who is a good gait keeper for our finances.

Liliane

I'll warn you now. It is vary rare that you will find a GI doctor, or any doctor for that matter, who will approve of Enterolab. It's a slightly...unorthodox, unproven method of testing, besides which, the doctors want you to test at THEIR hospitals.

[steve-o]

Liliane,

I've been considering enterolab, and have the same concerns you do about the validity of their tests. My blood test was somewhat inconclusive, and my biopsy was negative (but they only took 1 tissue sample), so I'm hoping enterolab can give me a definitive answer as to what’s ailing me.

I'm really underweight, so I'm primarily interested in their test for intestinal malabsorption. I did some googling, and found this abstract about one of Dr Fine's research studies. It basically says that his malabsorption test is just as accurate as the dreaded "72 hour stool collection" test:

Open Original Shared Link

Also, if you read Dr Fine's curriculum vitae...at the bottom, it lists all the journals he's been published in. You can search the web for more specifics on what these studies found:

Open Original Shared Link

Another concern I had, was whether or not everybody comes back with some type of positive test....otherwise saying, is he just telling people the result they're expecting to hear? But there have actually been several posts in this forum asking that very question, and it turns out that lots of people have results that are negative.

So it seems like enterolab is a legitimate operation.

Hope this helps,

Steve