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Some Inconsistencies In What Dr.s Are Saying

itsallgood

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itsallgood Rookie
itsallgood
Posted

BACKGROUND: Since my 15 yr. had infectious EBV (Epstein Barr) three years ago, he's really never been the same. PERPETUALLY NAUSEOUS, CRAPPY IMMUNE SYSTEM... He was diagnosed with type 1 diabetes a 1.5 years ago.

At our first appt. a few weeks ago, (with this dr.) he said that he had negative tests for Celiac from previous dr. but they arent always accurate (so didn't test again). In fact, he said the only "sure fire" way to know is how one responds to the diet. I went ahead and put him on gluten-free diet while waiting for the Vit. D tests (came up low) in the meantime, and within a few days he went from being gray, in bed, nauseous, sore, to his normal self again.

When he called with results, he said the Celiac test that was previously done was 95% accurate and Celiac can probably be ruled out. He put him on Vit. D supplements (50,000) and said that he'd like to test for "sprue". I thought that was the same thing? He also said his hemoglobin was a little high. Anyone have thoughts?

So now these are the tests he's ordered (they faxed me a copy and some of it's hand written...hard to read):

Quantitative immunoglobulin

tissue transglutaminase

endomysial auto-antibodies

fasting a.m. cortisol

lyme

ACTH stimulation test (thsi one says three hours/lavendar/SEP Freeze)...huh?

PPD

PTH

Renin/Aldost...??

DHEA-s

HIV--been done when he had EBV, (negative)

SPEP

B-12/Folate

Ferritin

He asked if I wanted him to order an endoscopy, but I really don't care about an official diagnosis of celiac if it means subjecting him to more.

In summary, are the things he said that I find inconcistent:

1. at the 1st appt. he said the "Celiac test" that the ped. did (only an IgG) wasn't always accurate

2. Few days later when he called for the "non-celiac" results he said the previous tests from ped. done for Celiac were "95% accurate" and that his improved health on the diet could be the "placebo effect". but, he reported a Vit. D def and hemoglobin was high (not terribly, but risen to 16.6 since last test which was 15)

3. He said the testing (to be done next week) shouldn't be influenced at all by the fact that he's already been gluten-free for 3 weeks. much of what I'm reading says different. If it meant having to put him back on gluten to find out, I won't do it...not worth it.

I dug up an old report from the original "celiac test" thsi is what it says:

tissue transglutiminase AB IGA .03 [0.0-3.9] U/mL

negative (less than) 4.0

equivocal 4.0-10.0

positive (greater than) 10

Comment: tTG antibody, especially Iga, is sensitive and specific for untreated Celiac Disease. levels can decrease significantly in response to a gluten free diet. The IgG assay is used mainly to detect celiac patients who are IgA deficient."

What does this mean?

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