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Shared Enterolab Results With Ped

CantEvenEatRice

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CantEvenEatRice Enthusiast
CantEvenEatRice
Posted

Hi Everyone,

My 20 month old son tested positive through Enterolab a few weeks ago for gluten and milk intolerance. I took him off of both and he definitely improved. Lately he has been having more problems and I think he is reacting to other foods. I decided that we needed to run some more tests to rule out other allergies. He actually developed hives after eating peas yesterday. We had previously discussed Celiac with our PED and she ran some bloodwork, but the lab lost it. That is why we went with Enterolab. Anyhow, I decided to fax her the Enterolab results. She is super nice, but I do not think she believes the Enterolab at all. She wants to run the ImmunoCap which I agree to check for other allergies. She also wants to run the other Celiac tests that were lost, especially the tissue transglutamise (spelling?). He already tested negative for the gliadin antibodies. I explained that he has been gluten free for several weeks now so I don't think it would show. I don't know if it would show even if he was eating gluten based on everything I read on this forum. Anyhow, she said it would definitely show if he has Celiac even if he isn't eating gluten. Is this true? Even if he tests negative for Celiac through the blood, I am going to keep him off of gluten and dairy. I hope she supports my decision even if the bloodwork comes back negative. Has anyone run into a problem with a ped thinking you should not take your child off of gluten if the results are negative? I did explain that his symptoms definitely improved when he stopped eating gluten and dairy and she said that was good. I really like our PED and hope she supports our gluten free decision because I do not think his bloodwork will come back positive. I am actually more concerned about other allergies because I think we have the gluten and dairy figured out. I hope he doesn't have a peanut allergy. Why is the medical community so against Enterolab?

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Guest nini
Guest nini
Posted

I can't speak for Enterolab because we didn't go that route, but my daughter's bloodwork was negative for Celiac and her ped. gi said "it's just IBS"... and sent me back to the pediatrician... I told her that with or without her support I was going to try the diet, but I would prefer her support. She fully supported my decision to try the gluten-free diet and when my daughter responded miraculously to the diet she couldn't deny the proof. You have to stick to your guns and trust your mommy insticts. Keep looking for other allergies or food intolerances, but since you've already noticed an improvement off gluten, I don't think you need to pursue an "official" celiac dx, especially if Enterolab confirmed your suspicions.

Nikki2003 Contributor
Nikki2003
Posted

My daughters GI dr said if they are not eating gluten the tests will be neg. So that is why until the biospsy he said just feed her normally and don't cut out the gluten it will make the show neg even if she really has it.

It does make a difference I got this info from a dr at childrens hospital in boston. It is true.

CantEvenEatRice Enthusiast
CantEvenEatRice
Posted
  • Author

That's what I thought about needing to eat gluten to get the blood tests. But, they are drawing blood anyhow for other allergy testing so I guess they will run the Celiac tests too. I know he has it so I do not need a positive result through bloodwork, but I wonder what the PED will say. He was positive through Enterolab and he had a positive dietary response so that is really all I need. Thanks for your responses!

vampella Contributor
vampella
Posted

Enterolab, I have a question about this place. Do they only do testing for americans or can people out of the country also have testing done trough them and also how much doe sit cost. I'm in canada.

Thanks in advance

Char

CantEvenEatRice Enthusiast
CantEvenEatRice
Posted
  • Author

Check out their website at www.enterolab.com

I think they can ship to Canada, but I am not sure. The costs vary from about $99-$370 depending on the test.

Nikki2003,

Do you have Celiac also? It is interesting that both your daughters have it. I am seeing more and more entire families testing positive. Both my parents have it, I have it and my 1 brother has it. My other brothers are thinking about getting tested as well as testing their children. I never realized how much it can run in families. I thought the chances were slim that my son would have it, but as soon as he started eating products with gluten, the symptoms started. Good luck with your daughters!

Mamato2boys Contributor
Mamato2boys
Posted

If it makes you feel any better, I shared our results with my son's GI doctor and she totally doesn't believe in EnteroLab either. She basically told me I had been ripped off, and said "the celiac diet sucks." :blink:

Check out their website at www.enterolab.com

I am seeing more and more entire families testing positive.

Yup. My son has two GS genes. We had NO idea we were gluten sensitive too. His results specifically said that meant that DH and I have at least one gene each, and that HIS children will have at least one gene as well. :(

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CantEvenEatRice Enthusiast
CantEvenEatRice
Posted
  • Author

I wonder why doctors think that Enterolab is a scam? I decided that if I find out it is officially a scam one day, then I will deal with it then. I think most people who test through Enterolab have Celiac and are just looking for validation of their symptoms. There are so many positives because who would spend the money if they did not already have the major Celiac symptoms. I would like to see more info on Enterolab's control studies. I would be concerned if EVERYONE, even those without symptoms, tested positive. They have to come up with better testing for Celiac in the medical community. It is amazing to read story after story about children who are so ill and the doctors call it "unspecified toddler's diarrhea" or they just don't know. Why can't better tests be designed or better yet, why don't more doctors just suggest the diet to see? I went to doctors for 10 years and no one ever mentioned that it could be food causing my problems! It is all so frustrating to me!

Mamato2boys Contributor
Mamato2boys
Posted
I wonder why doctors think that Enterolab is a scam?

I have no idea, but it absolutely frustrates the hell out of me that she WOULD NOT even CONSIDER the possibility. I explained to her that EnteroLab had ZERO to gain by telling me the results were positive vs. negative. She still wouldn't hear it. :angry:

AndreaB Contributor
AndreaB
Posted

I don't believe enterolab is a scam. There have been people that tested negative (including my husband who has 2 celiac genes). We were at the beginnings of this and I don't believe I would have tested positive through bloodwork, especially since I had been gluten lite (extremely) for 1 1/2 months due to intolerances to gluten and wheat. It was just around the time we tested through enterolab that I started realizing that oats and barley products were bothering me.

tarnalberry Community Regular
tarnalberry
Posted

You can't have antibodies to a substance in your blood (which is what the tests are for) if you don't have the substance in your body. (Does she suggest that you'll test positive for an AIDS test even if you don't have AIDS? That screening test is looking for antibodies, not the virus itself. Sheesh. I hate it when doctors are inconsistent!)

aprilh Apprentice
aprilh
Posted

I will say that a lot of dr's and pediatricians are ignorant on this subject. I would definately stick with your mommy instincts and do what makes your child feel best. Go ahead with the other allergy test just to see what is going on with the other foods. Or you could do the elimation diet and eliminate the top 10 allergy foods and then re-introduce one at a time.

Either way, just know that A LOT of people on here did not have the support of their doctors and just think where they would be if they had NOT listened to their gut instincts.

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