Confused About Tests...

[mars817]

Hello,

My brother was diagnosed with Celiacs 3 or 4 years ago. I had similar symptoms (tummy problems, neuromuscular pains etc) so I had a blood test and it was negative, so we figured I was fine. Fast forward I've recently been having major anemia and vitamin deficiency problems that we can't figure out (bad enough that they are concerned I'm going into heart failure and I'm 32 years old..) so I asked about celiacs again and my doctor retested, the blood result was negative. I had a colonoscopy and endoscopy by my general surgeon and asked about celiacs and he did a biopsy as well. The endoscopy and biopsy were all fine.

I saw entero labs tests and decided what the heck, might as well see what it has to say. I just got the test results and it is saying that I have a positive for anti-gliadin, but they say that the normal is less than 10 and the abnormal is >10 to 500 and I have a 21. Anybody know more about this? I also had the gentic test done and it says I have one gene that predisposes me to celiacs and one that to gluten sensitivity (so both parents would at least have the gluten sensitivity..). Also I had tests for reaction to cows milk, egg and soy and they all came back above the normal range as well.

I guess I'm just really confused how my blood and biopsy would be normal but this positive, and how meaningful are these tests? Thanks for any advice or direction.

[GFinDC]

Hi Mars817,

If the testing doesn't show a positive result it is a good idea to try the gluten-free diet for a few months to see if anything changes. We have some memebers on the forum who have never tested positive but still have celiac disease. The gluten-free diet is a healthy diet and wont't hurt you. If testing doesn't show results, then it is up to you to figure out if gluten causes a problem for your body. You can do that by going gluten-free for 2 or 3 months and having your vitamin/mineral levels retested. Unfortunately the celiac disease testing just isn't perfect at this point.

[mars817]

My brother goes to the celiacs center at columbia and he tells me I really need to have an official diagnosis to help with the other stuff going on, but it's doubtful the testing from enterolabs would count for anything and even they won't give you a celiacs diagnosis. I am just confused if that is what it is why was I positve for milk, egg and soy as well? Also do you know where I can find more info on the genetic testing. It says I have allele 1 is 0201 and allele 2 is 0303 and then I am 2,3 (subtype 2,9). Just trying to figure out what this all means. I've been hesitant to go gluten free since I'm in the middle of a bunch of testing for other stuff, and I would like the diagnosis if that is what is actually going on.

If I'm having immune responses to all those things could it be something else going on? It seems like if it were celiacs I would only have the response to gluten?

[kareng]

Some info about stool testing:

Open Original Shared Link

Why don

[mushroom]

You are most likely "over"-reacting to a lot of things you will not react to further down the line. Your gut is not acting normally and most likely letting things into your bloodstream that shouldn't be there, and that is why you test positive. When your gut heals you will probably test normally to other foods and not react. And most celiacs cannot handle milk at first because they cannot produce the enzyme lactase in the gut which is needed to digest it. This enzyme will return when you heal. If you look at some of the signatures of the folk on this board you will see that they have initially problems with lots of foods. Some of them continue to be problems, some of them they are able to eat again. I can now eat corrnstarch and potato starch again, as well as all dairy. Some foods I have not yet challenged.