Ds Ttg Was Very High...ped Just Called With Results

[wolfie]

I finally convinced DS's (10 years old) Ped to test him after asking him for the past 5 months. He had wanted me to have the biopsy confirmed on myself before testing the kids. We were evalutaing DS for ADHD with the Ped and I asked again since it can be related to some of those symptoms AND DS complains about stomach aches all the time. His tTG came back at 222....it was supposed to be under 20. We are being referred to a Ped gi specialist who will decide whether or not to do an endoscopy/biopsy or just have him go gluten-free. I also asked the Ped about testing DD (3.5) now, too, since it is obvious that this is running in the family. He said to ask the gi specialist when we see him. We probably won't get in for 4-6 weeks, so at least DS can enjoy vacation next week.

So, my question is this.....how likely is it that he does NOT have Celiac with his tTG that high? Total serum IgA was normal. I ask b/c my testing was not complete....IgG was the only elevated number and I went gluten-free (with very positive dietary response) before seeing the gastro b/c I was told to by my PCP who didn't know better.

TIA......boy are things going to change around here.

[penguin]

Considering your son's ttg was what, 11 times above normal and TtG is the most specific celiac indicator...I would say that yeah, he's got celiac.

[Smunkeemom]

I hear that there are no false pos. on blood tests, and that if it's pos. you got it.

Now, how possible is it that he has damage already? not sure on those odds, but if he doesn't go gluten free, he will eventually get damage.

[wolfie]

Thanks guys. That is pretty much what I thought, but DH is saying the test can't be right. I think he is in denial. He has a co-worker who is Celiac and was deathly ill when diagnosed, so he has a hard time believing that symptoms can differ person to person.

We find out next week when he sees the gi specialist.

[Guest nini]

his blood test was about as high as mine... yeah, he's got it... whether or not he has damage YET is irrelevant, if he continues to consume gluten he will eventually get damage. Regardless of what the specialist says, after you are done with any testing he wants to do (which in my opinion at this point is overkill) go ahead and put him on the diet... he has Celiac based on those numbers.

[floridanative]

the ttg indicates 99% specificity rate for Celiac. The only way he doesn't have it is if he has liver disease or diabetes instead.

Did he have a lot of viruses too or just stomach aches?

[chrissy]

with a Ttg that high he's probably got damage, even if an endo doesnt' catch it.

[wolfie]

Did he have a lot of viruses too or just stomach aches?

No, he is overall pretty healthy (except for this now). Just frequent stomach aches (no D, but some C), asthma, environmental allergies, anxiety and possible ADHD. He rarely gets sick (cold or stomach bugs). I begged his dr to test him after my going gluten-free and adding all his symptoms up.

Thanks for all of the responses. He doesn't appear to have blood sugar issues (although it has been a couple years since he was tested).

I do plan on the gluten-free diet as soon as we get done with the gi specialist. Heck, my numbers looked nothing like his and I have seen a HUGE improvement. Now to get DD tested....is 3.5 too young for the results to be conclusive?

[Guest nini]

my daughter was 3 when she was tested, and her results were negative, but her response to the diet was nothing short of miraculous. The tests aren't as reliable in children or adults as the medical community would like you to believe. Positive dietary response will tell YOU for sure if you have a gluten intolerance, but you will probably be hard pressed to get a Dr. to dx. Celiac based on that... my opinion (and strictly MY opinion) is that Positive Dietary Response is THE most valid diagnostic tool. It's quite simple, if you improve on the diet, viola! you have your answer!

[wolfie]

my daughter was 3 when she was tested, and her results were negative, but her response to the diet was nothing short of miraculous. The tests aren't as reliable in children or adults as the medical community would like you to believe. Positive dietary response will tell YOU for sure if you have a gluten intolerance, but you will probably be hard pressed to get a Dr. to dx. Celiac based on that... my opinion (and strictly MY opinion) is that Positive Dietary Response is THE most valid diagnostic tool. It's quite simple, if you improve on the diet, viola! you have your answer!

I agree with you completely on the positive dietary response, as that is how I figured out my issues after my positive blood test. It is night and day with my experience. There is no doubt in my mind now and I am certainly not doing a gluten challenge and making myself miserable to find out what I already know. DD on the other hand doesn't have any symptoms, so it would be hard to tell in her if her blood tests were negative or inconclusive.

I guess we can get her tested and then go from there. Thanks for your response Nini!

[Guest nini]

she may not have any obvious symptoms, but there may be some subtle behavior things that you have just chalked up to the age! (my daughters behavioral issues were NOT subtle by any means) I'm not saying that you are wrong that she doesn't have any symptoms, I just think you might be surprised by something you don't realize is or could be a symptom! LOL!

It is harder to get kids to comply with the diet if they don't have obvious symptoms, but if you wanted to still try it with her after testing, this age is a really good age to start. People are constantly impressed with how healthy my daughter's eating habits are, and how little junk food she actually likes.