Enterolab Question

[e&j0304]

Any thoughts? It's kind of a mute point now because I've already ordered the tests, but now I am having doubts about the money I spent on it. It says that it is ok to be gluten-free for the tests and they should still be accurate...do you think that's true?

I have been struggling with this whole thing so much. I know that some of you had neg. test results for your children and have had great success on the gluten-free diet and have left it at that. I have also seen a HUGE improvement with Ella, but this nagging voice in the back of my head always makes me wonder if it isn't something else and she really doesn't have a gluten intolerance. I guess for my peace of mind I would feel better knowing for sure when I have to explain to Ella why she can't have the same treats at school as everyone else...

I don't even know if I'm making any sense. The thing is that if the enterolab results come back neg, I think I'll still keep her on the diet because it's working. So am I crazy to want these results?? Does anyone else feel this way? I just want so badly for Ella to be fine and to be able to always feel like she fits in, etc. Of course I know that no matter the situation, kids will always have a time that they feel left out or that they don't fit in regardless if they have a medical condition, braces, freckles, etc.

Anyway, I'm done rambling now. Hopefully I'll get the answers I'm looking for. Thank you to everyone on this board. You've all been such a great help to me.

[Carriefaith]

If the diet is making her feel better, than that in itself can be a positive test for gluten intolerance. I would assume that she would have a gluten intolerance based on that alone and the enterolab tests should back that up. I think that you are doing the right thing. If the diet makes her better, than stick with it!

[e&j0304]

Thanks for your response, Carrie.

Apparently I did something wrong by posting this question on the post diagnosis board also. I didn't mean to break the posting rules here. I just wanted to check to see if anyone post diagnosis had done enterolab and I figured that some of them if they were older may not check or respond on the children's board.

Again, sorry

[KaitiUSA]

Thanks for your response, Carrie.

Apparently I did something wrong by posting this question on the post diagnosis board also.  I didn't mean to break the posting rules here.  I just wanted to check to see if anyone post diagnosis had done enterolab and I figured that some of them if they were older may not check or respond on the children's board.

Again, sorry

<{POST_SNAPBACK}>

It's not a problem it happens all the time. I can put it in the section you would like where you think you would get more responses. I also put the link where to respond on that other one.

[e&j0304]

Kaiti,

Thank you. If you have time to post the link, that would be great. If not that's ok too. After all, I've alreadt ordered these tests so I guess it makes no difference whether others think I should have done it! Ever since I found out here that my daughter didn't have the full panal run I've been wanting some more definite answers, Anyway, thanks again!

[tarnalberry]

I don't even know if I'm making any sense.  The thing is that if the enterolab results come back neg, I think I'll still keep her on the diet because it's working.  So am I crazy to want these results??  Does anyone else feel this way?  I just want so badly for Ella to be fine and to be able to always feel like she fits in, etc.  Of course I know that no matter the situation, kids will always have a time that they feel left out or that they don't fit in regardless if they have a medical condition, braces, freckles, etc. 

Anyway, I'm done rambling now.  Hopefully I'll get the answers I'm looking for.  Thank you to everyone on this board.  You've all been such a great help to me.

<{POST_SNAPBACK}>

It sounds like you're just lacking confidence in your own observations. If you already know that you're going to keep her gluten-free, then the test results are irrelevant. But have confidence in your observations. There is no one - other than herself - who knows her as well as you do, and who knows the changes the diet has made. Objective, numeric lab results are NOT the only valid medical tests, even in Western medicine. Trying out the diet is also a perfectly valid test!

[ILOVEOMC]

HI,

I am right with you in that I also wonder if my son's diagnosis is correct. Iguess we can beat ourselves over the head about this but ifthey are doing well going gluten-free then so be it. It would be nice to know if it is really Celiac or just intolerance or something else entirely,but we can only do our best. I think what makes it hard is that it is not our body and so we have trouble knowing how they really feel and respond to things. Hang in there with me!

[e&j0304]

tarnalberry, you are completely right in saying that I am lacking confidence in my observations. I also agree with ILOVEOMC. The fact that Ella is so young and I really can't know how she feels is what makes this harder. I can't argue with the fact that she's doing so much better, but I still wonder. I think it's also because Ella didn't have the "typical" symptoms of someone with celiac and her improvements are not as measurable as another persons may be. I do feel that she obviously has a gluten sensitivity, but just want to know for sure.

Anwyay, thanks for understanding and at least helping me to feel like I'm not a complete basketcase!

[Rachel--24]

Hi,

I know exactly how you're feeling. I had Enterolab done last month after suffering for 3 years with no answers. My results were positive and the diet seems to be working...I'm gaining weight and feeling better. My original bloodwork came back neg. last year. I was gluten-free 2 weeks before the blood test but noone told me it mattered. After the test my doctor told me to eat plenty of bread and pasta and all the high calorie foods since I was losing weight fast. After taking his advice I ended up pretty much bed-ridden. I'm thankful I took the Enterolab test...obviously gluten makes me sick. I still wonder a little if maybe there is something *else* going on besides the gluten but as each day passes and I'm only getting better I'm definately gaining more faith in my results. I think the Enterolab results will come back positive and this will give you some peace of mind that you're doing the right thing for your daughter. Dont worry about her having not been on gluten for the test...I was off gluten 4 months and still came back positive.

[KaitiUSA]

Dont worry about her having not been on gluten for the test...I was off gluten 4 months and still came back positive.

In some cases it might not come back accurate if she has been gluten free though. It just all depends..you have to weigh in the factors and how high the resuts would have been before. If they would have been low then being gluten free may have altered them to become normal. With blood test and biopsies it is essential to be on gluten way before testing. With Enterolab it is different and they say if you have had gluten in the past year but I still don't know how they would detect it if you haven't had it in a long time.

[lbsteenwyk]

I just want so badly for Ella to be fine and to be able to always feel like she fits in, etc. Of course I know that no matter the situation, kids will always have a time that they feel left out or that they don't fit in regardless if they have a medical condition, braces, freckles, etc.

Try not to focus on how celiac disease will make your daughter different. Every child is different; as parents it's our job to teach our children the value of individuality. Some children need glasses, some kids have diabetes, some kids have ADHD, my daughter has celiac disease. Sure, it's a part of who she is, but it's not the most important part. I'm trying to show my child how to take this in stride, deal with it when necessary, but not focus on it. It's easy to get overwhelmed by the gluten free lifestyle in the beginning - it seems that the entire focus of your life is on celiac disease and the gluten-free diet. But as time goes by, it really does become less of a focus and more of a natural part of your life. Also, don't lose site of how the diet is changing your daughter's life. I remember you saying that your daughter was so focused on food that she couldn't even play normally with other children. It sound like the gluten-free diet is actually helping her to live a more "normal" life.

I sympathize with your wanting a definite diagnosis for your child; I didn't get one for my daughter either. Trust your instincts; you've seen Ella make a remarkable improvement on the gluten-free diet and that should speak for itself.

[e&j0304]

Thanks, Laurie. You are totally right, she is able to play normally with other children now and for that I am very thankful. She still has her moments of irritability and fussiness, but what 2 1/2 year old doesn't, right?

Ella is SO much better now than she used to be and food is no longer controlling her thoughts and her ability to function socially with her little friends as well as just being able to play with her dad, her brother and me.

I did send off her stool and mouth swab samples to enterolab today, however. We'll see what comes of it. Hopefully I'll get what I'm looking for, but if nothing else you are all right in saying that the proof is in the pudding so to speak and what I really need to focus on is the fact that Ella is a happy and healthy little girl now.

Thanks again

[Nevadan]

I did the Enterolab thing after self-diagnosing by diet change. I did this for a number of reasons:

1. I thought it might help me figure out how serious my sensitivities were, particularly regarding malabsorption. (I was dx'ed with osteoporosis 5 yrs ago and have had a low level anemia all my life)

2. I wanted their DNA testing since I think they test for more versions of the gluten-sensitive gene than most other labs. I'm a believer in DNA analysis as a predictor of probabilities of eventually having various unwelcome health conditions.

3. Curiosity

Re item 1, I didn't get asmuch satisfaction from their results as I had hoped. I had elevated levels of antissue transglutanminase IgA and antigliadin IgA, but no malabsorption.

Re item 2, I didn't have the gene version for celiac disease but have a double copy of one of the other versions for gluten sensitivity. Based on their results, I did a lot of research regarding what this might mean in the future and found plenty of related health problems I don't want; therefore, this did help with my gluten-free motivation.

Re item 3, except for their DNA testing which I think is probably believable, the jury is still out until Enterolab publishes their methods and gets some peer review. Waste of money, or peace of mind - who knows until then.

Bottom line, I'm more a believer in "if gluten-free feels better, then do it regardless of test results.

George

[Claire]

If there were no other reason, testing for a definitve diagnosis gives you something to present to family members who are also at risk - given that celiac disease is a genetic disorder and likewise the gluten sensitivity.

DNA mapping is pretty convincing. Claire