Two Positive Blood Tests

[Budapest]

Hi. We're new here. My son, who is four years old, was diagnosed with diabetes at 22 months. He has been tested yearly for celiac, and this time the results came back positive-- IgG level was 30, IgA was 119. The blood test was done a second time and was again positive.

We have been told that a biopsy is used to confirm the results. This would mean waiting another one or two months, between scheduling the surgery and waiting for the results. I'm wondering why the biopsy is so necessary-- what else could these blood results mean, besides celiac? Are children ever diagnosed without a biopsy?

It's frustrating to have to wait, though the doctors seem to think there's no need to rush. He does not seem to have obvious symptoms. He has seemed more tired and irritable lately, which his preschool teacher also noticed. Could this be related in some way?

In the meantime we are thinking a lot about how we would get started with the gluten- free diet.

Looking forward to hearing from you all... thanks.

[happygirl]

You may want to ask your doctor to run the more specific tests for Celiac - like the tTG IgA and the EMA IgA. I'm guessing that the tests you had done were the AGA IgA and the AGA IgG. No one test is perfect, but the tTG and/or EMA tests are more sensitive/specific than the AGA tests. After you get the results of those, you can then make a decision with more information. Your doctor probably can get you in sooner with a GI, especially if you stress your need for a quicker endoscopy with biopsy (not surgery!) Its a quick procedure with use of sedation, not general anesthesia. You can start the gluten free diet without the results - but you have to be gluten free until the testing is over. You don't have to wait to get the results to try the diet.

Diabetes is related to Celiac...you have a great doctor for monitoring your son or Celiac - many doctors do not.

Research has found that most Celiacs don't have what we think of as the "common" symptoms - GI related, usually. They think now that most Celiacs do not have the 'obvious' symptoms.

Welcome to the board! It is a great resource and you will learn a lot here.

[kaiess]

My son, 9, type 1 diabetic also, was tested last year and his TTG was 95 (normal under 20). He has no symptoms that we can see and his scope came back negative. They discovered duodenal ulcers and thought maybe that was causing the high TTG. Anyways, we treated the ulcers then the TTG was repeated and it came back 149!! This was 6 months after the first test. I was panicking yet they were not worried too much seeing he has type 1 (could skew the results), and the fact that his biopsy was negative just 3 months before and no symptoms. They decided to wait, run a TTG again and if the results are higher they will scope again. I was told if he's over 200 it is almost certain Celiac diagnosis. We have just had that TTG drawn and are awaiting results. In the mean time I'm trying to figure out how to live life gluten-free if it comes to that. I also know of another girl here in town with the exact same results as our son and also Type 1, no Celiac symptoms. Our ped endo says she knows of a few kids with type 1 and these false negatives. We are hoping for the best but preparing for the worst just in case. Good luck, I know it's hard being patient. Our ped gastro will not diagnose unless there is a positive biopsy. We're in BC, Canada.

Kathy, mom to Jakob, 9 dx Type 1 diabetes Mar2004, pumping MM 522 + CGMS

[kaiess]

Oh, also ask for the genetic marker tests. We had it done on our son and he has both markers. That does not mean he has or will have Celiac. What the test will tell you is you will NOT have Celiac if you don't carry any of the genetic markers.

Kathy