Will Test Be Reliable?

[hornbeck0920 0]

Hi. My baby, Tommy, and I have been gluten-free for a month now (except for a few accidents) when I began to suspect that he was allergic to wheat and either allergic to oats and barley, too, or just having a cross reaction to them. His skin prick tests were negative, but since the gluten-free diet is the only thing that has ever helped his life-long screaming and vomiting, the allergist ordered a blood test for celiac and told me to keep him on the gluten-free diet for at least six months before tryng wheat again, regardless of the test results. After reading up on the disease, I'm almost positive that Tommy, my two other kids, and my husband have celiac disease. I talked to the nurse at their Family Doc today to ask if the doc could order tests for Shirley (5) and Jeffy(4), and she told me that the doc said she'd have to see Tommy's test results before ordering tests for my other kids. But I'm worried that since he's only a baby and has already been gluten-free for a month he might get a false negative. My kids might not get tested at all if their doc doesn't believe that Tommy is sick. Does anyone think he'll be able to get accurate results? I don't know the name of the test the allergist ordered, or even how many tests. I just know that they took two vials of blood. Even if too much time had passed for him to get a positive result, are there tell-tale signs that would let a doc know there's something amiss? I'll take Shirley and Jeffy to another doctor if I have to. Their doctor thinks I'm nuts anyway. Tommy has kept her very busy and they probably think I have Munchausen by proxy. Hey, you know there's something wrong if you go from a Monday morning to a Friday night without taking a shower or brushing your teeth and your hair is stiff with dried barf because you don't have time to care for the baby AND practice good hygeine and you go to the grocery store anyway because your husband doesn't read lables. I would just like a doc that CARED about all of that. I'll keep my chin up though. Thanks for any help.

[Ursa Major 5]

Hi, and welcome to these boards.

I am sorry to say that you have a very ignorant doctor, who tortured your baby with taking all that blood for nothing. First of all, those tests are extremely unreliable in children under six to begin with, and secondly, after being gluten-free for a whole month, you are guaranteed a false negative, even if it would have been positive a month ago.

Since celiac disease is not an allergy, the skin prick test wouldn't show it anyway. That was to be expected, unless Tommy is allergic to wheat on top of having celiac disease.

For Tommy, the one test that would still be accurate in showing if he is gluten intolerant, would be the one from Enterolab. They test the stool, so no more torture. This test is the most accurate one available, even though it isn't cheap.

I would switch doctors to have the other kids, your husband and yourself tested. After that, I would just make the whole house gluten-free!

I hope it all works out for you. I am glad Tommy is feeling better on the gluten-free diet, keep up the good work!

[mamaloca2 1]

I am so sorry to hear about everything you are going through. Why won't the doc run tests on the rest of you regardless of results? Does it have to do with the insurance? In my case, I told the doc my concerns and she sent us to a lab, even though she thought I was just a hypochondriac, but I had to pay for it in cash ($250) because insurance needed proof of the need for the test. Mine concerns apparently weren't enough. If you have to, I would find another doc. Or like Ursa Major said, just make the whole house gluten free. You will likely find out best that way anyhow. As for your husband and family, you might have to make up a list of ingredients that are code for gluten that they keep with them. I take pre-made meals and snacks to my in-laws whenever I leave my daughter with them. They also have a list of everyday items that she can have (like nestle choc. chips, prego traditional spaghetti sauce, ect...) It's a real pain in the butt for you to have to do all this, but may save some suffering in the long run. Good luck and stay strong!