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Enterolab Testing Help Please....

Luvbeingamommy

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Luvbeingamommy Contributor
Luvbeingamommy
Posted

I wish I could afford to do a full panel on myself and my two sons, one has pretty major bowel issues and the other has more minor constipation issues. We just afford the 900 some dollars it would cost right now.

I am trying to come up with the best testing plan for myself and my 2 year old. I was trying to decide for myself who had a positive panel, but negative scope, early symptoms though....pushed testing more then anything because of a stroke I had. I am pretty sure I will get the complete panel with gene test. For my 2 year old, I've only had him on the diet a few days, and am having problems with him getting into items with gluten, going to have to go mostly gluten free for our snacks all together. Anyway, I was trying to decide if it would be worth doing the whole panel or maybe just the gluten sensitivity and then wait and see if I have the gene and maybe eventually do that?? I'd save a couple hundred for now.

Should I mention this testing to my doctor?? Not sure what he will think of it?? Wouldn't change what I would do, just curious.

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nora-n Rookie
nora-n
Posted

bumping this up

I am in europe where we have universal health care...here it would not cost anything to get the ordinary blood tests done on the kids.

Interesting that your blood tests were positive.

Negative biopsy does not mean negative, as celaic typically is patchy and they easily can miss the celiac.

Also, I know from people who posted on forums, that when they finally had the video capsule endoscopy, that celiac could clearly be seen on the images, or that the celiac was at the wrong end of the small intestine. noen had posisitve biopsies before...

What blood tests were positive??

If they did the endomysium antibody test, then you are celiac even with negative biopsy, because that test is very very very specific.

early celaic is always patchy.

Gene test maybe?

There are people who had postive bloodwork, negative biopsies, and then positive gene test and because of that got a diagnosis.

sbj Rookie
sbj
Posted

Just wondering - did that Enterolab doctor ever publish?

nora-n Rookie
nora-n
Posted

they send out the gene tests to the american red cross, they do not do them themselves.

Luvbeingamommy Contributor
Luvbeingamommy
Posted
  • Author

bumping this up

I am in europe where we have universal health care...here it would not cost anything to get the ordinary blood tests done on the kids.

Interesting that your blood tests were positive.

Negative biopsy does not mean negative, as celaic typically is patchy and they easily can miss the celiac.

Also, I know from people who posted on forums, that when they finally had the video capsule endoscopy, that celiac could clearly be seen on the images, or that the celiac was at the wrong end of the small intestine. noen had posisitve biopsies before...

What blood tests were positive??

If they did the endomysium antibody test, then you are celiac even with negative biopsy, because that test is very very very specific.

early celaic is always patchy.

Gene test maybe?

There are people who had postive bloodwork, negative biopsies, and then positive gene test and because of that got a diagnosis.

Actually 2 out of 3 in the panel were positive, but the endomysium was not. I think it was/is early celiac if anything, I had a stroke in Nov., but only started having symptoms in October. In fact, I had just nausea with no stool problem until just lately I started having diarrhea just 3 weeks ago, after the scope. My husband thought i should stay on gluten until there was enough damage to be seen, but I on the other hand was tired of feeling so terrible. Hard to know what to do. I also had an elevated ANA, pretty high, but was tested for TONS of autoimmune and connective tissue problems and found nothing.

Yesterday my doctor mentioned Chron's with the evelvated IgG and IgA, but I don't really have many of the symptoms?? He did mention the capsule you swallow with a camera, I'll have to mention that to my GI doc that I see on the 16th.

He did say if it was gluten it could take awhile to feel better, to give it time.

I am thinking the gene test would help too, is the one from enterolab pretty good??

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