My Son Is Not Alone!

[momothree]

It's been a while since I posted, but I just had to now. After my 12 year old son was diagnosed by biopsy in May, I had the blood test and so did my 10 year old daughter. I can hardly believe it myself, but she came back positive. I came back negative. It's crazy--my son had virtually no symptoms, and my daughter doesn't either. I know her chances are greatly increased since my son has it, but what are the chances of having 2 silent celiacs? My husband still has to get his test done (tomorrow), and our 21 month old was tested and it came back negative. We have her on the diet anyhow since she is the only one of my kids that actually has symptoms (ironic ). We'll get her tested again in a couple of years, or, perhaps, do a gluten challenge on her in a year or so. In a way, as terrible as it sounds, I wish they had some symptoms, because I think it'll be that much more difficult for them to adhere to the diet. Hopefully, since it's the two of them, they will be encouragement for each other. I guess we'll have to wait and see. Thanks for listening.

[celiacgirls]

My 2 daughters and I are all gluten intolerant. One daughter, 8, had tummy issues which led to the testing (by Enterolab). Since hers was positive, I tested myself and my other daughter, 10. We were both also positive. My older daughter and I both feel alot better emotionally even though I didn't think we had any symptoms. I don't have any trouble getting either of them to stay on the diet because they can both tell a difference. My oldest tried to eat a cupcake shortly after she started the diet and got a stomach ache and could tell a difference with energy level, mood, and brain fog.

I think it would be difficult for anyone to stay on this diet if they didn't see some improvement in some way. I would expect your children to do thier own gluten challenge by either cheating or making a mistake and maybe they will then notice a difference.

[Ursa Major]

I agree. You kids will likely get a noticable reaction once they've been on the diet for a while. Many here actually got diarrhea and all the awful gastro problems when glutened, even if before the diet they hardly had any noticable symptoms.

Testing on toddlers is notoriously unreliable, and your little one (especially she has symptoms) was very likely a false positive. If you find she responds to the diet in a positive way and her symptoms disappear, you'll have your answer. No challenge needed, as it could make her quite ill.

Are you going gluten-free with the rest of them? You might be surprised at the difference it could make.

[2Boys4Me]

My younger son is the only one in our family with celiac. He didn't have any symptoms either, except anemia and he was at the lowest percentile for height and weight, but was still the same height as many of his classmates in the couple of months before diagnosis.

He has no problem sticking to the diet - I hope that continues when he's a teenager. I also have no idea if he's accidentally ingesting gluten via cross contamination because of the lack of symptoms, so I just assume that we are doing a good job.

Good luck on your gluten-free adventure.

[floridanative]

I agree that is is easier to have at least two kids with Celiac if any of them have it. I don't have kids but I see my sisters kid fight and aggravate each other. I don't see how one would be gluten free without the other making them miserable about it.

[2Boys4Me]

I agree that is is easier to have at least two kids with Celiac if any of them have it. I don't have kids but I see my sisters kid fight and aggravate each other. I don't see how one would be gluten free without the other making them miserable about it.

Sounds like you've overheard my older son asking for "extra gluten sprinkled on" his supper . He has no problem eating gluten free - all our suppers are gluten-free except for pasta, pizza and hamburgers. Ty gets his own noodles, pizza and his own bun. Big brother just gets huffy when we can't stop at any old place to grab something to eat because there's nothing there for Ty. Most of the time he's good about it, but if he's in a contrary mood, watch out! (He's a good kid, and he knows why we can't stop just anywhere, but he's not shy about complaining. Ty never does - he's a champ! )

[momothree]

Thanks for all your input. We are just starting the gluten-free diet with our daughter today; she just returned from camp. I'm anticipating some difficult times ahead, but, yes, at least they'll both be experiencing the same things. Who knows, maybe it'll even make them closer--like a special bond (to try to put a positive spin on things . Ursula--in regard to your comment about giving my toddler a gluten challenge in a year or so, could it really make her ill? What can you tell me about that? I would hate to make her sick, but I would really like to know before I have to send her off to her first little birthday party with her own "special" cupcake. Her symptoms are somewhat vague (especially compared to some I have hear of or read about), and it can sometimes feel like we are thinking we see improvement when there isn't really that much of any. I keep thinking--what are the odds that all three have celiac? It almost seems unlikely. I've hear that the blood test is accurate after 3, and I've also heard that it isn't accurate until after 5. Can anyone tell me when the best time to have her re-tested? I don't follow the gluten-free diet myself, but all of the dinners, and any other meals that we all eat together as a family are all gluten free. It's easier to prepare that way, and it makes it easier for my kids too. Who knows, maybe somewhere down the road we might all eat gluten-free (especially if my husbands tests come back positive), but it's hard to say just yet.

[Ursa Major]

If your little one is gluten intolerant, and she is off gluten for a while, yes, it could make her very ill. Some people who never had any obvious symptoms before are reporting getting terrible reactions after being off gluten for a while.

Plus, if you want to do a gluten challenge to retest her, you'd need to have her eat gluten for at least six months, possibly up to a year to make the test valid.

If you really want to know, and can afford it, the best way to be sure is testing by Enterolab (Open Original Shared Link). Those tests are reliable no matter what age somebody is, are non-invasive (stool testing), and you don't have to be on gluten for them (even though after a few months they become unreliable, too, of course).

[celiacgirls]

I agree with Ursula. If you can, test your daughter with Enterolab. My 8 year old daughter showed mild symptoms from the time she started eating wheat. We have a family history of celiac, so she was tested multiple times over the years with the blood tests. They were all negative.

Including my brother and sisters, and their children, 9 people in my family have been tested by Enterolab and all are positive. They all have some slight symptoms of celiac. My mother has not been tested but doesn't eat gluten because she feels better. Her mother had celiac disease. So, needless to say, I think it is possible your daughter has it, too, even though her blood test was negative.

[momothree]

Thanks for the info. I had no idea that she would have to be back on gluten for such a long time in order for the test to make sense. I imagined it would only be a couple of weeks or a month. I checked out that link to enterolab, and it looks very interesting. The prices aren't even as bad as I thought they'd be (even with the Canadian exchange). Definitely worth looking into.

Karen-it's amazing that so many in your family have celiac. Wow! I know there is a strong genetic component to it, but that is quite a few. I guess my babe's chance of having it are greater than I thought. We are trying to convince others in our family to be tested too. Hopefully they will. Thanx

Raegan

[AndreaB]

Raegen,

I underwent allergy testing because of my infant son's eczema. After finding out what I was allergic to included gluten/gliadin/soy and dairy I made some diet changes. I had not been on dairy except for maybe 3-6 times a year at potlucks where nothing else was available and I lived off soy and gluten. I dropped soy completely and went mostly gluten free. The allergy test said I wasn't allergic to oats and barley. My son's eczema got a lot better but would not go away. I then took the plunge and had all of us tested with enterolab except the baby. No one had any symptoms...I was just going off my allergy test and had been looking at this site and seen references to enterolab. We opted for all the tests that they offer. I am gluten intolerant as well as my oldest son and my daughter. My husband and I are soy intolerant and my oldest son has mild malabsorption. That really surprised us since he had no symptoms. Both of the older kids has something that looks like real mild eczema that still has yet to go away, so eventually I need to find the money for allergy testing for them. All of us have 2 genes that either predispose to celiac or gluten intolerance. All of us are on the totally gluten free diet and my infant son's eczema has totally gone away. We are also all on the soy free diet. My children scored 9 on that with 10 being the intolerance level. I am very glad we got the tests. My mother has a hard enough time and thinks we are being too picky with cross contamination when we visit her as it is. At least with the tests I can show they need to have it that way. She's never asked to see the actual results though. My daughter got glutened twice in the last month and has had some tummy troubles and "d" with those.

[GFBetsy]

Also, if 2 siblings in a family have celiac, other siblings have a 40% chance of having the disease. In my mother's family, 4 of the 10 children have come up positive for celiac. So it's not that unlikely that your 3rd has the disease, considering that your first 2 do have it.

As far as gluten challenges go, there was a representative from iNOVA (they're the people who developed the test for tissue-trans-glutaminase) at the national GIG conference in Salt Lake last month. He told me that they recently had a new test for celiac pass the FDA (in just six weeks! that's got to be some kind of record). None of the labs have picked it up yet, but it should be readily available by the time you would consider a gluten challenge for your baby. This test is more accurate and specific than the other blood tests currently available, and he told me that it is even accurate on infants! Additionally, a gluten challenge would only be necessary for 3 - 4 weeks instead of 3 months. This could still seem like forever for those who experience a lot of negative symptoms, but it's certainly a lot shorter than current requirements. Good news for those of us with small children!

Just some information . . . hope it's helpful!