Testing Kids - How Far To Push When It's Negative?

[T.H.]

This is my first post here, so sorry if it's a bit scattered!

My father has celiac disease, and I was just diagnosed with it 9 days ago - eek, big changes! But since that made 2 in our family, I immediately requested the celiac blood panel for my kids. My 11 year old daughter came back positive for celiac, and my 8 year old son came back negative.

I don't know if the doctor is going to suggest biopsy for my daughter to confirm or not, and I would welcome anyone's experience in having the biopsy done for their children, or avoided for their children.

Also, I am worried about my son. He already has issues with consuming dairy, and has all his life. And he's tiny - at least a head shorter than the average kid his age. He's active, but often has these mood issues, like he's tired and cranky and can't 'cope.' In the past, we've noticed him like this when he accidentally has dairy, but recently, I'm starting to notice it when I can't think of anything that might be causing it, not even simply being tired and cranky. Or maybe I should say, there's this subtle difference when he really IS just tired and cranky, and it's not the same as what I'm seeing now periodically.

So I very much worry about whether we are getting a false negative with him, but I don't really want to subject him to unnecessary tests. Has anyone else run into this with their own children? What did you do?

As an added note, he is likely going to be going on a gluten free diet, in any case, because I'm the cook, and with two of us to cook for who are gluten free...the whole family is going to get to enjoy that diet too. :-) But I would hate to miss something important about his health by not testing, and I know if he's going gluten free, the tests would be useless later...

So, again...any words of advice, experience with this? Any help you could give would be much appreciated!

Thanks,

T.H.

[runningcrazy]

Hi, Im fairly new to this too so im sorry if this isnt a huge help.

I would say be strict with him being gluten free as well, see if you notice any changes. I have had 3 negative blood tests, but we ordered an enterolab test to see what it says, and ive been gluten free nearly 2 weeks now and i feel great. So i think even with the negative tests i react to gluten.

The blood tests can check for celiac, not intolerance, there is the possibility of that.

If you want some answers, i would consider looking into enterolab tests if you can pay for it. I got the gene testing and the stool test to check for antibodies. You may or may not want to do the gene test because you know you must have the gene since you have celiac.

It can tell you if your son is reacting to gluten. It is much more sensitve than the blood test. Type in enterolab in the thread searcfh box on this website and youll see a lot more info. It takes about 3 days to recieve your kit and 2-3 weeks for results. Myh results should be here soon!

good luck~

[Rondar2001]

Hi, my daughter had an endoscopy to confirm her diagnosis when she was 7. We felt that having a definitive diagnosis would be important as she gets older. There is no questioning a positive biopsy and hopefully this will be a tool to keep her gluten free as she gets into her teens and may want to cheat on the diet. A confirmed diagnosis also gives us a little more credibility when dealing with teachers and family in our effort to keep her gluten free.

The biopsy itself was quick and painless. She was at the hospital at 7 am and home by noon with no lasting effects.

For you son, I would discuss his symptoms with his doctor and see if they would biopsy him as well. In addition to checking for celiac, they may see another issue that could be causing his symptoms.

The choice to biopsy is of course yours, these are just the reasons that we decided to go ahead with it.

Good luck!

[momxyz]

Hi, my daughter had an endoscopy to confirm her diagnosis when she was 7. We felt that having a definitive diagnosis would be important as she gets older. There is no questioning a positive biopsy and hopefully this will be a tool to keep her gluten free as she gets into her teens and may want to cheat on the diet. A confirmed diagnosis also gives us a little more credibility when dealing with teachers and family in our effort to keep her gluten free.

The biopsy itself was quick and painless. She was at the hospital at 7 am and home by noon with no lasting effects.

For you son, I would discuss his symptoms with his doctor and see if they would biopsy him as well. In addition to checking for celiac, they may see another issue that could be causing his symptoms.

The choice to biopsy is of course yours, these are just the reasons that we decided to go ahead with it.

Good luck!

if the biopsy comes back positive, I agree, then you have a confirmed diagnosis.

But since his antibodies were negative, the biopsy could very well come back negative. Some people with celiacs don't present with GI symptoms as their first or main problem......

I think the gene testing would be very useful.

[DanAbimytwomiracles]

An elimination diet is just as accurate as a biopsy. And I don't ever see a need to put a child under general anesthesia when there is a perfectly acceptable non-surgical method to determine an answer. With my daughter, who had more mild, atypical celiac symptoms and a negative blood panel, we knew within 3 days that things were better, and after 4 weeks it was amazing the difference. Giving her a gluten challenge after those 4 weeks made all the symptoms return. Our final proof was that after 1.5 years of barely growing (from 2-3.5 she gained 8 ounces), she then gained 5 lbs in one year.

[T.H.]

Thanks for all the replies! I'm thinking I may avoid testing any further for the little guy and simply keep good track of how he's reacting to the gluten-free diet. Thanks!

T.H.

[balmerhon]

My 3 yo son's blood work came back negative. He had an endoscopic biopsy and that also came back negative for celiac. BUT they did find allergy cells (eosinophilic colitis). This is despite his RAST tests coming back negative as well.

We did 2 weeks of gluten free with no change in his symptoms (diarrhea). This was prior to the endoscopy. We're now doing dairy-free. We know he now has an allergy, but we don't know yet what it is. We may have to revisit a gluten elimination if dairy does not seem to be the problem.

So, bear in mind, it's not always celiac. But blood tests for younger kids are often incorrect.