Do You Automatically Test Your Kids?

[Tritty]

Hello! I was recently diagnosed with celiac through bloodwork and then it was confirmed with a biopsy. I have 3 small children: 3,2, and 11months. I had the baby tested via bloodwork because he is so small (he has no other "symptoms"). It came back negative. They also did a nutrition panel of iron, electrolytes, protein, etc. just in case it showed up a false negative and he was suffering nutritionally. They came back excellent - so no worries about him for right now. I know it can show later - my ped said to not rule it out if something else comes up.

However, I can't decide what to do about the other two. My ped says they are young for the test (he'd prefer them to be over 5). They have no symptoms. They are healthy and happy and plenty big. Do I not worry about it until they're 5 or showing some signs of an issue (gastro or otherwise)? Or do I test them for the gene and then every 2 years or so for celiac just to make sure? Or any other suggestions?

I'd prefer not to make our whole house gluten free if I don't have to - I know it's harder on me - but I make all of the food anyway and we are just extremely specific about where they may eat. And I wash my hand 100x a day We just can't afford for all of us to be gluten free if they don't have to be....

[jayhawkmom]

My 8 year old just tested positive, via bloodwork, after 2 previous negative tests. So, I think that even if they aren't showing signs and symptoms, since you are a positively diagnosed Celiac, it would be a really good idea to blood test every year. It might seem excessive...but I honestly believe that my the damage that is now "showing up" in my older child could have been prevented had we been more diligent with his testing.

However, with the first two tests... I had NO idea what any of "this" all meant.

My 17 month old was just tested, and his results were absolutely negative. However, he's been gluten free since October. His pediatrician just wanted to have a "baseline" number to work with, for future reference.

My household is gluten free, it's SO much easier. But, again... all 3 of my children are gluten free, as am I. My husband is while he's at home, not so much during the workweek.

[ravenwoodglass]

Hello! I was recently diagnosed with celiac through bloodwork and then it was confirmed with a biopsy. I have 3 small children: 3,2, and 11months. I had the baby tested via bloodwork because he is so small (he has no other "symptoms"). It came back negative. They also did a nutrition panel of iron, electrolytes, protein, etc. just in case it showed up a false negative and he was suffering nutritionally. They came back excellent - so no worries about him for right now. I know it can show later - my ped said to not rule it out if something else comes up.

However, I can't decide what to do about the other two. My ped says they are young for the test (he'd prefer them to be over 5). They have no symptoms. They are healthy and happy and plenty big. Do I not worry about it until they're 5 or showing some signs of an issue (gastro or otherwise)? Or do I test them for the gene and then every 2 years or so for celiac just to make sure? Or any other suggestions?

I'd prefer not to make our whole house gluten free if I don't have to - I know it's harder on me - but I make all of the food anyway and we are just extremely specific about where they may eat. And I wash my hand 100x a day We just can't afford for all of us to be gluten free if they don't have to be....

I would say test them. Celiac disease and gluten intolerance can be quite insideous. It can effect emotional health and learning long before any GI symptoms develop.

That said the tests are notoriously unreliable in young children. You say you had tests done on the youngest because he is small, where was he on the charts at birth and where is he now? If he has lost a lot of ground I would suggest putting him on the diet for a few months and see if it is effecting his growth. It can do that without obvious problems.

My DS had severe growth stunting even at a year. All tests were normal and he had no obvious issues until he was a preteen and then they were more mood related. By the time we realized he was celiac he was out of his teens and will never be taller than 5 ft. I would hate to see that happen to your son.

You will find with time that you yourself will have a hard time healing if you are trying to cook gluten meals for the family and gluten-free for yourself. In addition many of us find that if we stick to simple whole foods, like meats, veggies, fruits, rice, buckwheat etc and don't try to replace all the gluten stuff with gluten 'goodies' it can actually be less expensive. We use much less processed convience foods at my house and while it took some getting used to we are much healthier for it.

This is all a real learning curve but the rewards in energy, good spirits and good health are so worth it in the long run.

[hershey]

The only way that my son's problems were finally diagnosed is because my mother was positively diagnosed at age 72 last summer. She STRONGLY suggested genetic testing through Entero Labs for all her kids. When my genetic tests came back positive for both gluten intolerance and Celiac Sprue, I had both my children tested. I thought I had no symptoms, but I have a long history of autoimmune disorders and fibromylagia. My son was sick and we and his doctor had no idea why.... If my mother hadn't insisted on the testing, maybe we'd have figured it out by now or maybe he'd still be sick. I'm really glad she was so firm. My daughter has all the same genetic markers but no symptoms that she's aware of, and at age 24 she at least is armed with the knowledge of what could be happening to her.

Except for my son's breakfast cereal, we don't purchase much special gluten free foods. We ate whole, unprocessed food previously. After failed attempts at either buying or making a decent sandwich bread, he has switched to taking containers of chicken salad, egg salad, etc for school lunches, or corn tortillas and taco makings. He's actually the envy of his friends. Other than my husband's occasional beer and HIS cereal, the house is gluten free and it hasn't cost us any more to eat this way than it did before.

This is such a strongly genetic condition that I'd have testing done. Even if they carry the genes and show no symptoms, damage could be accruing and blood tests will show negative.

It really isn't more expensive if you choose healthy foods instead of processed. I know I'm looking at this from the perspective of someone with an already sick kid, and one who is old enough to make choices and understand the ramifications. Good luck, whatever you choose!

[happygirl]

I don't see any harm in testing them now. What can it hurt? The only thing you can gain is knowledge from this....

Knowing that they have Celiac, and then follow the gluten-free diet, which can prevent so many problems from undx'ed Celiac.

Knowing that for now, they don't have Celiac.

Knowledge is power....and I know as a caring mom, you only want what is best for your children. They are lucky that you care enough about them to ensure their health is of upmost importance. Celiac can exhibit serious symptoms....or no symptoms. So the absence of symptoms doesn't mean that they don't have Celiac. This is why Celiac researchers recommend that ALL first degree relatives (parents, siblings, kids) are tested.

Testing is more knowledgable in children after 2, so its ironic that he tested your youngest, and not the older ones

Since you have a rock solid Celiac diagnosis, I think it would be worth it to test your kids for the genes. This way, you will pretty much know which of your kids *could* ever have a problem. Your doctor can order the gene test through their office...they will probably use Prometheus Labs for the genetic testing. This could save you a LOT of time and worry over the years (if they don't have the gene, they *probably* won't have Celiac...about 98% of Celiacs have one or both of the genes...and will save you from re-testing them year after year).

[darlindeb25]

I have 5 kids and with what I know now, I certainly would of had them tested, I wish I knew then what I know now. I think at least 3 of my kids are gluten intolerant and now they are adults and aren't sure if they want to be tested. One was blood tested and the doctor said negative. One's doctor told him he doesn't need tested at this time. My daughter doesn't want to know.

[Tritty]

OK - so I can't figure out how to insert questions from your posts so you can figure out easily which ones I am answering - like I said - I'm new at this....

Being gluten free for me is not as difficult as it sounds. I have my own cereal or I eat a banana for breakfast. I make the kids cereal, etc. I let them eat whatever for lunch - gluten or not. (Now by whatever, I don't mean I don't pay attention - I always have a protein and a fruit and a grain). I eat lunch when they are napping (or at work on the 2 days I work) - so there are no cc issues there. Dinner is always gluten free. I refuse to make seperate dinners

When I spoke to my ped about all of this - I did not have a ton of knowledge (not that I do now either!). I had just been diagnosed that week and was still absorbing it all. He said if there was one I was worried about in particular he would test them just to ease my mind. That's why I he tested my youngest. So my guess is that he will do whatever test I finally deem necessary. He said he went to a roundtable held by our local Children's Hospital about GI issues and they did talk about some of the tests for celiac there. He was very interested in my symptoms and which test my doctor used and wants to keep updated on me - in case of similarities.

My youngest started out around 90% at birth - I have big babies By week 10 he was 50% and is now 25%. He goes back in a week for his 1 yr checkup - so I'm anxious to see where he is. I've always attributed his being small to how active he is (he crawled at 5 months and walked at 9 - he's not 1 yet and he runs!). He doesn't eat a lot - he HATES baby food. He'll only eat what he can feed himself. Very strong willed

My oldest started out 100% and is now 50%. My husband is not a big guy - he's only 5' 11" and I'm 5' 8 1/2". So 50% is about 6 ft. So at 25% he's not SO little, but he's still little compared to my other two (My little girl is 95% still!).

I've been leaning towards the genetic testing, but I didn't know how involved that was or how acurate in little ones. Is that something that can't be wrong? I would think that would be the easy way to go - then I can just test the ones who have the gene every year or so...

Hey and while I'm at it - how do I get my pic to show up on the side under my name?

[lovegrov]

NIH and all the celiac experts I know say that ALL first-degree relatives absolutely should be tested. This includes your brothers and sisters and parents. Your youngest is most definitely too young for an accurate celiac test, but the other two should be old enough (the 2 year old is border line).

All of my first degrees were tested and my 70-year-old father was highly positive on everything despite having only minor symptoms. My children were negative but will be tested again in the future.

richard