I came back w/ + antibodies

[wellsfamily]

Hi everyone. I am usually in the parents w/ Type 1 room (since that is what I am) but I have been having some GI issues, and know as much as I do about CD and D, I asked my Dr to run the panel. I came back w/ a level of 14 for anitgliadin IGG, which I am told is a positive antibody. I am pretty sure everything else was neg. Also, they couldn't find my CBC so not sure if I'm anemic. I will know that tomorrow. Any thoughts or comments or expert opinions? I am assuming my next step will be a visit to a GI dr, since my primary has NO idea what to do next, and will probably have an endoscopy.

Thanks for any opinions or your stories of dx.

Heather Wells

[bkfkmc]

My son had positive antibodies and a negative biopsy, but the Dr. prescribed him to a gluten free diet anyway. He said it was his opinion that he was in the process of developing celiac and preferred that he go ahead and begin eating gluten free since there has been a link to untreated celiac and lymphoma. Not trying to scare you by telling you this, but depending on your doctor, you may be advised to go gluten free regardless of the scope. Had I known my son's Dr. would do this regardless, I think I would have opted to just not do the scope.

On the other hand, several others have posted on here that they have positive antibodies and negative scope and their dr. just continues to monitor. The differences between doctors is puzzling to me, but we're adjusting well so we'll just go with it.

[aklap]

Hi everyone. I am usually in the parents w/ Type 1 room (since that is what I am) but I have been having some GI issues, and know as much as I do about CD and D, I asked my Dr to run the panel. I came back w/ a level of 14 for anitgliadin IGG, which I am told is a positive antibody. I am pretty sure everything else was neg. Also, they couldn't find my CBC so not sure if I'm anemic. I will know that tomorrow. Any thoughts or comments or expert opinions? I am assuming my next step will be a visit to a GI dr, since my primary has NO idea what to do next, and will probably have an endoscopy.

Thanks for any opinions or your stories of dx.

Heather Wells

Hi Heather,

Depending on the doctor, you'll either be sent on to a Gastro or it'll be ignored. The interesting thing is that s/he ran a Antigliadin test. These tests have fallen out of favor for the tTG test - they aren't as specific for CD as the tTG. One problem with tTG test is that it works great when there's total villous atrophy [your villi are toast!], but is less effective with lesser amounts of damage. You need an entire panel (http://www.celiacforums.com/viewtopic.php?t=217) to give you a better picture of what's going on - sadly most docs don't have a clue about what to look for or even diagnosing CD.

Please keep this in mind when you are going thru the testing. If they determine that you do not have CD - but yet you still have your gastro issues - please do not absolve gluten from all guilt. Gluten can and does cause problems outside the realm of CD. Again, not many docs know it, but Non Celiac Gluten Sensitivity is a problem. Dr. Scot Lewey [a board certified Gastro, with a wife that has CD and has NCGS], is one of the docs that have given credence to NCGS. Please, spend some time reading his articles (http://www.celiacforums.com/viewtopic.php?t=3515).

I was "sick" for 1.5 years before I started doing dietary trials. All tests for CD were negative, the docs [all 4 of them - the gastro was the most useless :(] had no answers. Yet the only thing that gave me my life back, was going GF!

As for the + bloodwork and - biopsy:
1) It's possible the person reading the biopsies are not aware the small amounts of damage are not normal. Often 2nd opinions are obtained on biopsies [by those that are trained in what to look for]...and indeed the patient has CD. Samples have been mounted incorrectly, thus not giving the views that the pathologist needs.

2) Not enough samples were taken. Damage can be patchy, so if only 3 - 6 samples were taken [which most gastros do], damage could be missed. 15 or more samples are taken by Gastro's in the know! (http://www.clanthompson.com/exp_doctor.php?status=list_qs&coded_category=Tests%20and%20Their%20Results&coded_category_id=4).

Good luck!!