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holiday16

Just Got Sons Results From Enterolab...

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Of all my kids I thought my son would have been the one to test normal so I was very shocked to get his test results back as follows:

A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value

Fecal Antigliadin IgA 10 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 5 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score 1254 Units (Normal Range <300 Units)

Fecal anti-casein (cow's milk) IgA antibody 5 Units (Normal Range <10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0202

HLA-DQB1 Molecular analysis, Allele 2 0301

Serologic equivalent: HLA-DQ 2,3 (Subtype 2,7)

We had blood testing done for celiac which came back negative, but we also had his total IGA tested and he was on the very low end of normal so we decided to do testing with Enterolab. The fecal fat score is what really surprised me. He has a severe heart condition so if this is correct that's not good. I'm assuming at this point we'll follow up with more traditional testing for malabsorption. Has anyone else ever done this?

Also, can the TTG be normal and the high fecal fat still be caused by a problem with gluten? I'm very concerned as when my older dd tested hers was 431 and yet we saw a huge improvement after she went off gluten. She was always very skinny, but right after going off gluten she finally began gaining weight. Makes me wonder if his is this high what effect is it having on him especially since he also has his heart defect.

The big thing with my son that we have noticed is he's always hungry and thin, but with a heart condition that's not exactly concerning. Any advice on this by anyone has would be appreciated. We're already gluten free at home so it would not be a huge lifestyle change here, but outside of home it would be hard for him to accept. He's starting to fall behind his peers because of his heart so he's dealing with that already and this change on top of that just really does not seem fair.

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I had a very high malabsorption score...although not quite as high as your son's. I think mine was 913.

I tested negative for Celiac but the Enterolab results were all positive...including tTG. In my case the malabsorption wasnt resolved with the diet and I remained sick.

I've always been thin and have always had an unusually big appetite but I had no known health problems and my weight was always stable. When I became symptomatic I eventually started to lose weight despite more than adequate food intake.

No cause for my symptoms was found for almost 4 years but now I've been diagnosed with parasites and other gut infections. Because of underlying issues that I was unaware of my immune system was stressed and I became more susceptible to these kinds of infections.

Since your son has low IgA he may still have a problem with gluten which isnt showing up in the tests. Enterolab only tests IgA.

If he really does have malabsorption problems and there is no improvement on the diet...you might want to consider looking into other possibilites.

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Dear Holiday16, since your son has a heart condition, please get the book "Good calories Bad Calories" by Gary Taubes. Everything you think you know about heart/cholesterol/insulin/ the liver and diet is outlined in this book with the research that shows how the "authorities" came up with those "guidelines". Please Please get this book & read it & underline & highlight...

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Dear Holiday16, since your son has a heart condition, please get the book "Good calories Bad Calories" by Gary Taubes. Everything you think you know about heart/cholesterol/insulin/ the liver and diet is outlined in this book with the research that shows how the "authorities" came up with those "guidelines". Please Please get this book & read it & underline & highlight...

A young child with a heart condition probably isn't suffering from clogged arteries it's probably a heart defect.

Still, that book is excellent and everyone should read it.

I'm pretty sure having low IgA means those test results could be skewed. Send an email to Enterolab and ask about that, they're great about answering emails. Meanwhile, you might just try a gluten-free/CF diet with him anyway and see if things improve.

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Thank you for the replies. What he has is a heart defect. Essentially the left side of his heart never formed so he has a single ventricle. He had a cardiology appt. today and I talked with his cardiologist about the fat score and he was very concerned and would like him to be evaluated by a ped. GI especially since 3 of us have been found to react to gluten. It's a bit frustrating as far as medical history as none of us ever saw a GI and I was offered a scope when I was referred to an internist, but I had already been gluten free for a year so I turned it down. So, we know there's a history of issues with gluten, but none of us have really been fully evaluated for actual celiac.

So, all our diagnosis are pretty much result based which my internist accepted. Not sure how a GI would feel about that, but when I think about a gluten challenge for either of my daughters and the first thing I think is I can't take them on gluten, to me that's a pretty good indication there's a problem! Another frustration is all our blood tests were negative, but when I had my IGA tested it was low and when I had my son's tested it was normal, but barely so I'm not shocked the bloodwork was negative. Crossing my fingers we end up going to a good GI Dr. who understands. I think it helped when I saw the internist that my dh went with me and he told the Dr. the differences he saw with all of us off gluten and that really helped lend credibility.

The issues of concern today were that we've been consistently coming in saying that our son is getting tired easily, cries alot (which is unusual for an 11 year old!) and is always hungry, but it does seem to be getting worse. All the test today indicate his heart is still functioning well, but he ordered a stress test to make sure. He also ordered blood tests for thyroid and mono. At least with his history no one would just dismiss this and I know one way or another we'll get an answer from someone as to what's going on.

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I just had my kid retested for celiac disease and we are waiting for the results.  Her doctor does not hesitate to test since I have a firm diagnosis.  I can also say that my PCP and GI  never hesitate to check for other AI issues either.  They know that you can develop more than one autoimmune disorder.  Better to catch it early before damage!   If you get an endoscopy, be sure to do a gluten challenge 2 to 4 weeks prior or your result will be negative!  
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