My Little Girl Possibly Celiac/gluten Intolerant

[frieze]

ok one more question(maybe two)

I'm on a low carb eating plan but once a week you get to have a 'refeed.' If I ingested a lot of gluten during this time period, do you think that would equate to having the 2-4 slices of bread daily that is recommended for a gluten challenge?

Just a thought.

Another issue I'm trying to understand. If you have genes for Celiac it doesn't necessarily mean you have or will become a Celiac patient. Can the opposite be true? If you DON't have the genes you can STILL be or become Celiac??

the short answer? yes....the % of diagnosed celiacs, in the USA that are neg for the 2 prominent genes is apparently in the 1-3% range. however, in other countries other genes are acknowledged as being potential celiac genes....sooo if you repeat the genetic test and/or get a complete result, you may find yourself + for one of those. That is why the gene test has so little utility. Hashis is a known potential sequelae of celiac. You need to be 100% gluten free yourself. Your weekly refeed does not need nor should it, contain gluten in any form. good luck

[GFinDC]

Hi Betty,

You are right about a link between Hashimoto's thyroiditis and celiac. There are several people on the board who have both. People with celiac have a higher chance of getting other autoimmmune diseases. You can find lists by searching on celiac related condition or associated condition.

There are no tests for NCGI ) non-celiac gluten intolerance) yet. Bascially if you flunk the celiac tests they slap that NCGI label on you or IBS. Some people don't make IgA antibodies, so that 's why they do the total IgA test. If you don't make IgA antibodies, none of the IgA tests for celiac are valid.

It used to be that doctors thought children grew out of celiac disease. There is sometimes a honeymoon phase where symptoms go away or are reduced in children for several years. That doesn't mean celiac is gone though.

Since NCGi is basically a failure of the testing process, there is really no way to know for sure if you are celiac if you fail the test. But it could be that the antibodies would show up in your bloodstream later on, and damage to your gut may show up also. Most of the antibodies are in the gut to begin with, and not in the bloodstream. They do the blood antibody tests first because it is a simple non-invasive process. Usually an endoscopy is done afterwards to confirm villi damage. Celiac testing is not all that great. That is part of why 97% of celiacs are undiagnosed.

[BettyinMD]

grrr, I got the results back from my daughter's test last week.

I've so peeved!!!

You know what that jerk had tested?

TTg IGa

TTg IGg

That's it! I asked while we were in the office what the test included and he was like 'oh,it's very comprehensive, blah blah blah.' I felt ok with his response so I didn't bother busting out my list of the tests I had written down that I wanted done.

So now what? She's still eating gluten and still complaining her stomach hurts. The Dr we saw wasn't her regular Dr. I don't think I would go back to him anyway cause he was a jerk to begin with.

I'm just wondering if I should really pursue this before taking the plunge and going completely gluten-free with her. She tears up if something has 'flour,' in it because she wants to eat it but she says it will hurt

Something else I noticed on my OWN tests. The lab ranges are conflicting.

On one part the range for Gliadin IGG is 0.0-4.8. Mine was 0.4

For Gliadin IGA it was 1.5 (0.0-6.0)

But on another part of the test Gliadin IGG is 6 and it says <20 not detected

Gliadin IGA is 11 and it says <20 not detected

I'm confused.