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  1. I have done a lot of research on false positives and weak positives in the last few months because my 9 year old son's tTg IGA was 4.3 on a scale where 0-4 negative, 4-10 weak positive.

    What I found indicates that you are much more likely to have a false negative than a false positive. According to most of what I read, even if not all the tests are positive they should still do an endoscopy to check for damage especially if they are having symptoms such as your son is. Did they do the endoscopy yet? Some of the things that could cause a false positive on the tTg are cirrhosis of the liver, diabetes or heart failure but this is very rare. Given his symptoms it seems much more likely he has celiac. I hope they are able to figure it out soon so your son can start healing.

    My son is seeing a specialist next week. He was tested due to family history and not really sick at the time but in the last few months he has started being tired all the time and complaining of stomach aches. He has occasional bathroom issues and has become whinier than usual. I'm hoping the doctor will agree to do the endoscopy so we can see if he has it or not.

  2. My husband recently had a full celiac panel drawn here in Alabama and processed at Mayo's lab. According to paperwork from our insurance the amount the hospital here submitted was $1,443 but the amount they agreed to accept from our insurance as payment in full was $288 so there could be a wide range in what they want to charge you and what they might be willing to accept.

    Maybe if you called before you had it done you could negotiate a reasonable price.

  3. Thank you for your replies. I think you're right that I know in my heart that he has celiac and we can't wait until next year to do something.

    It wasn't our pediatrician that I thought knew so much. I actually assumed that she didn't but I was just grateful that she has always been willing to run the celiac panel on my kids given the family history and that she orders the correct tests and has them send to the lab at Mayo.

    The other doctor who reviewed his test results and said he doubted he had it is an authority at a celiac center in another part of the country. In fact his name is on many of the articles I came across in my research. And the odd thing is that all those articles say that any positive on any test means positive, although they should be followed by biopsy to confirm. I just could not imagine him saying not to worry for a year when he seems to be a big advocate for early diagnosis. I thought there was something I just wasn't getting.

    I am going to discuss with my husband whether we want to try to find a pediatric GI within driving distance that seems to be knologable about celiac or just try the diet. I would like to have a diagnosis to back me up when dealing with school but if I can't get it I'll do what I have to to get my son healthy.

  4. My son, 9, had a celiac panel done a couple of months ago at his checkup because my MIL and BIL both have celiac. His TTg IgA came back as 4.3 on a U/ml < 4 which is "Weak positive." All the other levels were negative so his pediatrician said that we should just test him again in a year.

    After doing a lot of research that lead me to believe maybe we shouldn't just drop it at that a very knowledgable celiac doctor looked at his test results that I scanned and sent to him and he said he doubted that he had it but also said to retest in 1 year. Since I highly respect his knowledge and opinion I was relieved and really thought I could just leave it at that until my son started to exhibit some different symptoms.

    He is not sick that often but he tells me he's tired all the time and seems to be much whinier than he used to be. He sometimes says his stomach hurts and/or that he feels dizzy. One day we had to leave a school function for my older son because he felt sick and when we got home he had bad diarreah. He's not sick so much that I feel sure he has a problem but enough to make me worry.

    So I'm wondering if weak positive means maybe he is in the beginning stages of celiac and the doctors don't think it would show up on a biopsy so they want to wait. If that's the case I hate the idea of him enduring 9 more months of damage before a diagnosis. I know we could try the diet but I think it would be much easier for all of us to stick to it if we had the diagnosis. Do some people get a weak positve result that later turns out to be negative? I compared his test results to my husband's (who does not have celiac) and my son's levels for the other tests, even though they were still in the negative range, were a lot higher than my husbands.

    Thanks for any advice you can give me.