Blood Work

[WorryMom 0]

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.

[Fiddle-Faddle 18]

I hate to say it, but I'm not sure I agree with you that your doctor is very knowledgeable about celiac.

A weak positive is the same as a weak positive for a pregnancy test: it's positive.

If he did the correct tests (i.e., not a wheat allergy test, but the "celiac panel"), those are testing for antibodies to gluten, and autoantibodies.

You don't produce them if you don't have a problem with gluten.

Unfortunately, many otherwise knowledgeable doctors are under the impression that they have to protect their patients from this awful, difficult diet. They don't realize that the gluten-free diet is not so difficult, not awful, and that feeling sick all the time is far worse.

If I were in your shoes, I'd find another doctor.

In fact, I was in your shoes--except I didn't bother with testing my son.

We discovered quite by accident that his severe eczema and occasional tummy aches cleared up when I went gluten-free--because that made him gluten-lite (because I was making everything gluten-free, except his lunches). And yes, the doctor told us that some kids just get tummy aches, nothing to worry about--but I figured if they went away on gluten, then it WAS something to worry about.

We challenged him on gluten twice--and both times, he again had severe stomach aches, diarrhea, and the eczema returned.

The second time, he was literally crying while on the toilet, and he said, very clearly, "I'm never eating gluten again."

He was 9 years old at the time.

And he hasn't once tried to cheat.

[TrillumHunter 17]

I think in your heart you know the answer. Fidddle-Faddle is right about all of it. It is an either or not situation not a matter of degrees. If you retest in a year and the levels are high enough to satisfy the drs, that means you've spent a year of your son's life poisoning him. It sounds like he did get the panel but only broke the threshold on the TTg IgA. That's celiac. Period. Even with a negative scope.

It's okay. You have the power to protect his health. Their are so many things in our kids lives we can't protect them from but this isn't one of them. Untreated celiac is a BIG deal. Some folks on here are very ill when all they needed was a diet change.

Take a deep breath and take charge! You can do it!

[WorryMom 0]

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.