So Confused Now!

[JacobsMom]

We went yesterday to the doctor for them to do the first set of blood test since Jacob has been gluten-free. I had all 5 of them written down to make sure this is what they were testing for...You know since they usually dont tell you anything...Well I asked him and he said he was only doing 2..

Anti-Endomysial EMA IgA

Anti-tissue Transglutaminase

I asked him why he wasnt doing the others and he said No need they are inconclusive....What are the other test for and WHY did he not do it....I get so fustrated when I talk to people who have been getting test and everyone gets all 5 of them done....Could it be b/c of his age??? I am so confused...What if he misses something!!!

He said I should know next week...Jacob gained so that was good...He said he LOOKS fine but he wants to see what the results are....

Have a wonderful weekend everyone!!!

[KaitiUSA]

If he is gluten free already then they will most likely come back negative and will not be accurate anyway.

The 2 he is testing for are the best 2 tests however they are used mainly to detect if there is damage in the intestines.

The IgA and IgG are not as accurate but are still good for detecting the antibodies to gluten.

I recommend the whole panel because it has been very effective.

If he is doing a followup blood test he should have the test done that came back high before to see if the level went down.

[Carriefaith]

If he is doing a followup blood test he should have the test done that came back high before to see if the level went down

I agree

I asked him why he wasnt doing the others and he said No need they are inconclusive....

maybe the doctor meant that his other blood tests were inconclusive before and he choose to do those specific tests because they were the ones that were high and positive before.

[ryebaby0]

(Wow! The forum format is all weird)

If your son has been gluten-free for a fairly long time, perhaps the doctor is just verifying that you are truly gluten-free, as indicated by a drop in the tTg level. If it hasn't come down much, even if he seems better he might still be getting gluten somehow. It's not likely to be negative yet, but it could be. The other tests don't always respond very quickly and they aren't as specific. My son had a whole panel done, then just a Ttg at 6 months and another at 18months out from diagnosis (he was pretty sick, which is why they restested so often.) His level went from 152, to 37 and finally to 4. My husband has only ever had the tTg done, and was dx without a biopsy from that alone.

Joanna

[JacobsMom]

OKay that makes me feel alittle better...I know the nurse said she would be interested to see b/c he was at like 175 before...I didnt ask what was at 175...I should have...He told me if the numbers didnt look good he would call me back next week and tell me what he thinks is the reason for that and then test him in a month...But if everything looks good we will retest in 3 months...

The doctor called me this afternoon and asked how Jacob was and I said well he has a runny nose ( which he told me yesterday that he had a cold ) but he was outside playing...He said oh okay well his white blood cells where high but if he is playing dont worry about it...DONT WORRY ABOUT IT...He obviously thinks there is something..probably just viral but still...I just hate when they dont say Well watch him he maybe getting sicker or something....Sorry to rant I just get so upset b/c this is my child who has been sick and of course I worry about everything I think I go WAY overbored sometimes...LOL Or that is what my husband says!!!

[Guest taweavmo3]

My husband says the same thing, that cracked me up. Anytime Emmie gets sick, he says I obsess about it too much. I always assume I've made a mistake and have glutenized her. Last week, she was running a really high fever (105) and I thought it had to be a gluten reaction, b/c she had no other symptoms. Turned out to be Roseola........so that taught me a good lesson!

We go back for our 6 month follow up in August, which is 3 months late b/c the doc was so booked up, so I'm curious to see what tests he'll run for her. I have no idea what her beginning numbers were, all I was told was to check out the celiac web sites, and buy the Dana Korn book, lol.