Blood Result Questions

[faithinhope]

Hi everyone... I'm new to this forum but not to gluten issues

We have a family history of gluten intolerance (people in the family who show negative reactions to gluten), and one biopsy confirmed case of celiac disease (the only person who has actually been biopsied).

When my first son first was exposed to gluten (besides through my breastmilk) he reacted very negatively. After two weeks of being on it (and I lose the term very loosely because he actually stopped being able to break down any foods, they all just came out undigested in his diaper or else he was throwing them up) he had bloodwork run and his blood tests were negative. I took him off all gluten and he got better. After that if he was getting gluten through his diet it was in very small amounts (as in cross contamination... never would he eat pasta/bread etc that was made from wheat/rye/barley). He got gluten in a larger amount one night several months later when he was 21 months old and reacted strongly again. We actually ended up in hospital. More bloodwork run and this time it was higher but still negative. I was told he could not possibly have celiac disease.

So now I have his test results in front of me. I have been doing more and more research and realize that his test results shouldn't have been positive right? Because he wasn't on gluten for long enough before either test?

My second question is why are the levels for measuring TtG different between labs? What do the reference numbers mean. I have seen some that say a positive is over 20, and others that say a weak positive is over 3.

His blood results were as follows:

12 months:

Gliadin IgA = 4

TtG IgA = <3

At 21 months:

TtG IgA = 5

Anti-Glutamic Acid Decarboxylsase = <1.00 (and this was flagged as abnormal but I'm not sure what it means)

He also has a hard time with iron and B12 absorbtion... he is always low in both as well as low hemoglobin, hematocrit, MCV, MCH.

He got known glutened more recently and didn't react nearly as strongly. I am wondering if it is worthwhile to persue testing through enterolabs and actually put him on a gluten diet to get the testing done since he's never had a proper trial on it. He is almost 3 now... will the stool results be accurate?

I am also thinking about having myself tested. I have had digestive issues my whole life, as well as enamel problems on my teeth, and when I was reading about people describing their brain fog I can relate to that as well. I am (newly) currently gluten free to see if it makes a difference for my second born, who is 2.5 months old now and exclusively breastfeeding but having a reaction to something (tried dairy first, made no difference).

Anyway, any thoughts would be appreciated.

~Alison

[GlutenWrangler]

Alison,

In my opinion, you shouldn't bother going through Enterolab. Their testing methods aren't proven. Dr. Fine still hasn't gotten around to publishing his research, after years of saying he's "about to publish". There's a reason for that. You already know that your son has issues with gluten. Putting him back on gluten will just cause him to suffer needlessly. If you're dead set on putting him back on gluten, do it for traditional testing. It may take 6 months or more, but at least the diagnosis will be solid. But honestly, I think your best bet is to just put your son on a gluten-free diet. You don't need an official diagnosis. And you're right. The testing that was done on your son couldn't possibly be accurate because he wasn't eating gluten. The doctor who told you that your son could not possibly have Celiac Disease is sadly mistaken. Any good doctor should know that a patient needs to be consuming gluten in order for the tests to be accurate. You may want to find a new doctor. Good luck,

-Brian