Tests For Siblings

[SilverSlipper]

I have a 9 yr old with celiac disease. I have two other children - both have been tested for celiac disease and tested negative. My oldest (due to numerous GI issues) has had two upper/lower GI's done and both came back negative for celiac disease. My youngest (6 yrs old next week) was tested a couple of years ago and it was negative (blood test). Lately, she's been having numerous stomach aches (as in daily). We tried miralax (thinking it was constipation issues) for two weeks (and everything came out 'fine'). We've tracked her diet to make sure there wasn't too much sweets, not enough food, etc. Our pediatrician told us to try reflux meds and we're on day three with no change.

She still has occasional diarrhea, occasional constipation and almost daily stomach aches. The stomach aches start about thirty minutes after eating - sometimes as quickly as while she is eating.

Is it possible to test negative (blood) and later have it come up positive?

For those who suggest to just put her gluten free, the school system needs a doctor's note to make gluten free lunches. (And I'd like to have their help with gluten issues). If I have to eventually put her gluten free, then I will.

[Dixiebell]

As I'm sure you have heard around here the tests for celiac are only about 80% accurate, meaning the children that tested negative could have celiac. The endoscopy used to be the gold standard, and I guess with some docs it still is, but they can also miss damage that may be there or maybe there isn't enough damage, yet.

Our pediatrician told us to try reflux meds and we're on day three with no change.

One of the docs at my sons office put him on reflux meds too, it did nothing for him. I would not keep my child on it any longer. It is not good for them at all.

Is it possible to test negative (blood) and later have it come up positive?

Yes it is possible, but they may have more damage done by then.

For those who suggest to just put her gluten free, the school system needs a doctor's note to make gluten free lunches. (And I'd like to have their help with gluten issues). If I have to eventually put her gluten free, then I will.

I myself would not trust my sons school to make gluten free food for him. I make his lunch everyday and I did this also before gluten free. Ask your doc if he/she would diagnose based on response to the diet. If he/she won't diagnose celiac, maybe gluten intolerance, which is the same diet.

[MacieMay]

Hi there!

Have your kids been gene tested? Is it possible your son, has a gluten-intolerance and not celiac? And can't Celiac be triggered at anytime in someones life? Maybe your 6 year old didn't have Celiac when blood tested two years ago.

If I were you, and your GI Dr. was willing, I would have your daughter blood tested again and then try her on a gluten-free diet and see how she does. If the tests come back negative but the gluten-free diet is helping symptoms maybe you can get your Dr. to diagnose her with a gluten-intolerance. That's what I did. My 21 month old had all the tests come back negative but the Dr. agreed to diagnose her with an intolerance. Her symptoms improved dramatically with the gluten-free diet. I hope this helps. Good luck!

[emaegf]

And can't Celiac be triggered at anytime in someones life?

Yes, Celiac can be triggered at anytime in someone's life. Just because the daughter was negative 2 years ago doesn't mean she is now. She should be retested.

The son could still have Celiac and should have a repeat blood work as well.

Also lactose intolerance should be ruled out as well. It seems to go hand in hand with gluten issues especially when they first go gluten free.

[SilverSlipper]

All three of mine are girls btw.

Dixiebell - sorry I should have mentioned that my other two kids have had recurring issues with reflux throughout their lives - not constant but it's a reasonable thing to try. So far, we've had great luck with the school system making a gluten free lunch. I go in once a month and look over labels and talk with the lunchroom staff. Because of all the preservatives and fillers, most of her food is bought locally so she has fresh meat, veggies and fruit. The other thing we need is the 504 plan that allows for her to miss school days if she's having a celiac reaction. I don't take her to the doctor unless it's significant (which happens maybe 1 or 2 times a year) because she usually starts losing weight and I worry about dehydration.

MacieMay - no, they haven't been gene tested. They had the blood test and then (for my second daughter, who is the one we worried about mostly) when it came up positive, we did the biopsy (also positive). Thanks for the suggestion - I'll do that after we give the reflux meds a few more days. Also, I should mention that our pediatrician is a two hour round trip drive (we live in a rural area). The doctor in town is good, but his office doesn't do lab work (and he's the only doctor in town that accepts our insurance). So, doctor visits are done when all else fails. (And we still have a ton of them).

emaegf - Thanks - I'll look into lactose intolerance as well. That wouldn't surprise me either.

I'll probably end up re-testing her before the end of the month. Thanks all!

[Roda]

Yes your child's tests can be negative and then be positive down the road. My youngest son was screened after I was diagnosed two years ago and was negative. He was retested last month and had a positive test. He has been gluten free now for two weeks. My son's NP at the allergists office wrote a note and signed a paper for school about us doing a trial of gluten free. He does not have a "diagnosis" per se, but it seemed adequate for the school. I don't have them fix his lunch and I pack him one everyday.

[SilverSlipper]

Thanks Roda - after our middle daughter tested positive, we tested the others but neither had symptoms at the time. My youngest had a bad bout with a chest/cough virus thing about a month ago that caused her to miss 9 days of school (and was then followed by an ear infection). She has had stomach aches ever since (we used probiotics with the antibiotics).

My brother has Crohn's and has always claimed that it was triggered after a nasty bout of flu and I wonder sometimes if Celiac can also be triggered and if so, is that what has happened?

Anyway, she's still having stomach aches this morning so I'm probably looking at a doctor's appointment for mid next week with her unless something changes.

[emaegf]

My youngest had a bad bout with a chest/cough virus thing about a month ago that caused her to miss 9 days of school (and was then followed by an ear infection). She has had stomach aches ever since (we used probiotics with the antibiotics).

My brother has Crohn's and has always claimed that it was triggered after a nasty bout of flu and I wonder sometimes if Celiac can also be triggered and if so, is that what has happened?

Yes having an illness, any illness can set off Celiac if you have the genes for it.

Two things are needed to become Celiac the genes for it and a stressor of any kind to the body. Some women will develop Celiac after having a baby or after starting menopese.

Has your brother been tested for Celiac? Many are diagnosed with Crohn's but really have Celiac.

[T.H.]

You might want to consider seeing if you can find a more celiac knowledgeable doctor too, if it's at all possible.

With one celiac in the family, if one of your children starts developing gut issues, I would think the FIRST thing that should be done is test them for celiac disease. with the whole 'triggers any time' issue, it doesn't matter that they've had a negative test before, ya know?

Also, as girls, it's a very good idea to encourage them to test themselves when they are adults, before they try to conceive, since there are such tragic potential consequences of being a gluten-eating celiac and trying to conceive (much higher rates of miscarriages).

That said - there is a really good chance your midgets will eventually develop celiac disease in their lifetimes, even if they don't have it now. It was one of the reasons we ended up deciding to have our 'negative' tested kiddo go gluten free too.

And then when we did, some of the problems he'd been having went away, and came back later with a gluten challenge, so now we're so happy we did.

[SilverSlipper]

emaegf - No, he hasn't recently been tested for Celiac. He said that he was tested for it at the time of his diagnosis of Crohn's. When my daughter's bloodwork came back originally, we thought she would have Crohn's rather than Celiac simply because of family history. (Her original bloodwork tested positive for Crohn's, Celiac and IBS but the biopsy came back as celiac disease). I told him he should re-test, just to see, but he doesn't want to, nor will he test his kids. Go figure.

T.H. - In our area, there is no more knowledgeable doctor as there is only one who accepts our insurance. He's not our regular, but I do use him for strep tests, ear infections, etc. and then let our regular doc know. Our pediatrician has been with us since my oldest was born and I can't change. My oldest has severe autism and is non-verbal. Our pediatrician has learned all the 'tricks' to visits (looking in her ears and throat for example - not usually an easy task for a child who doesn't understand). I called their office and spoke to the nurse (who checked with him) and asked if there was anything else I should try before bringing her in and he suggested reflux. So, it wasn't like an office visit where he ignored the Celiac history. Unfortunately, I no longer have a ped gastro because our insurance doesn't cover the one we usually see, so I need to find someone. Thanks for the suggestions.