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Jo.R

Testing Kids

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I have Celiac. I thought I was the only one in the family, but when I told my aunt what I had, and the symptoms she wondered if she and her granddaughter had it.

My kids show no signs of it. I have noticed that a lot of people have their kids tested. I was wondering why, did they show signs, or were you just wondering? Is there a good reason for me to do it? My only concern is that if I insist on doing the test, and they come back neg. and later on one of them developes problems I might have a fight on my hands getting them retested. What do all think.

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Well, since gluten intolerance is genetic, I think it would be a good idea for you to get your children tested. However, like you said, since they aren't showing any obvious signs, the tests will quite likely give a negative. Many with terrible symptoms get false negatives, so it's not always so reliable. However, I've read there are some gene tests that can be done, though I don't know if it can indicate whether the gene has expressed itself.

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Yes, it is recommended that all first degree relatives be tested (your parents, siblings and children). It is not uncommon for people to have celiac disease and to be asymptomatic, so you shouldn't rely on who has symptoms and who doesn't.

Also, people who are in "at-risk" groups (such as people with a first degree relative who has celiac disease) might develop the condition at any point in their life. So someone who tests negative during childhood, but who has a celiac parent or sibling, could potentially develop the disease later in childhood or when they are an adult. Therefore, repeat testing is probably necessary for all first degree relatives who are negative on their initial test(s).

I don't know if there are any evidence-based guidelines for repeat testing- (ie how often it should be done)? One recommendation that I heard once (from a GI specialist) was to do repeat testing in children when they graduate (ie after kindergarten, junior high, high school, college/university, etc.)- this wasn't based on any research evidence, but was his way of offering a recommendation that would be easy to remember. Obviously, if a previously asymptomatic child with previous negative results on the blood screening test started to develop signs/symptoms of celiac disease than testing should be done as soon as symptoms begin to appear.

I have 3 children. I had my 2 oldest children tested when I found out that my mom and myself have celiac disease. Both of my oldest kids are celiac- one was asymptomatic and one had a few symptoms. We don't know if our youngest (16 months old) is celiac or not.

You'll find a good pamphlet on diagnosis and testing in kids that has been written by the CDHNF (Children's Digestive Health and Nutrition Foundation) and the NASPGHAN (North American Society for Pediatric Gastroenterology, Hepatology and Nutrition). Go to www.naspghan.org or www.cdhnf.org and look for the "Diagnosis and Treatment of Celiac Disease in Children: Clinical Practice Guideline Summary".

This can be very stressful and overwhelming time when you are learning about celiac disease and wondering if your children have the disease too.

Good luck and best wishes!

Suzie

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I was recently dx so I had the gene test done on my 2 yr old daughter (through Enterolab). She does not appear to have celiac, although she has some constipation problems ( not severe) and had acid reflux as an infant (meds helped it though), but now her pediatrician wants to do the blood tests b/c the enamal on her teeth is wearing off. We are taking her to a dentist next month and will see what he says. My preference is to wait until she is 3 to have the blood tests, b/c they are supposed to be more reliable (but still could be false negatives).

I would suggest just going with the gene test for now and if your kids have the gene (or one of them), then possibly look further into testing. Of course, symptoms can develop at any time during life. I saw somewhere that if it is in the family (celiac), that the children should be tested annually, but that seems a little excessive if they don't have symptoms. It's a hard choice.

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I have Celiac. I thought I was the only one in the family, but when I told my aunt what I had, and the symptoms she wondered if she and her granddaughter had it.

My kids show no signs of it. I have noticed that a lot of people have their kids tested. I was wondering why, did they show signs, or were you just wondering? Is there a good reason for me to do it? My only concern is that if I insist on doing the test, and they come back neg. and later on one of them developes problems I might have a fight on my hands getting them retested. What do all think.

I actually had both children tested after I tested positive for gluten intolerance - and genetically double positive - but negative for the celiac genes. As it turns out, neither had elevated antibody levels - however, both had my gluten intolerant gene, as well as my son having one of the genes for celiac.

I guess the tests can give you some insight, even if they are, technically, negative for "active" gluten intolerance. I have not put them on a gluten free diet - but they do eat some of my gluten free foods. After the test results came back, I talked to them about what it meant - that they might develop problems later, like I did, and that at least they knew that they could do something about it. They also are very aware of how sick I get when I do have gluten, so they know how serious it can get.

It's a very personal choice. Depending on the age of your children, sticking to the diet can be difficult anyway. I know that some parents feel it's better just to go for it then to wait and see if symptoms develop. My thought was that genetics mean it might develop at some point - not that it's already a problem.

Sheryll

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I would reccommend testing and in addition becoming very familiar with all the different presentations of gluten intolerance from behavior problems and learning difficulties to problems with balance (clumsy was what I was called when it was really ataxia), problems with mood and concentration, problems with liver and gallbladder and so on. Celiac and gluten intolerance mimic many disorders not just the typical heartburn, constipation, intermittent D and such that doctors recognize. And if your children have lost ground on their growth charts, even if the doctors ignore it put them on the diet for a bit. Then do a challenge and see if they react. My son might be more than an adult 5 feet tall if I had only not listened to doctors when he was little and had insisted that he be more throughly evaluated. Growth and brain function lost in childhood can not always be regained.

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All Celiac experts strongly recommend that ALL first degree relatives are initially tested for Celiac.

Considering that you can develop Celiac at any point in life, a doctor should be willing to periodically test for Celiac. Or, test if there are symptoms. If your doctor isn't willing to do that, then the doctor is NOT knowledgable about Celiac, and you potentially do not want that doctor treating your child with Celiac.

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Thanks! I really appreciate you all giving me your input. My daughter is going in for 6 yr. check-up next month, I'll talk to her doctor then.

Suzie, I'm looking up those web sights as soon as I get done with this, thanks for that.

I'll also look up Enterolab and see about genetic testing.

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our ped gi says to test the whole family periodically---yearly if we know they have the gene and even sooner if the ones with the gene show symptoms.

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Jo: Your doctor can order the genetic testing, usually through Prometheus Labs. This way, your insurance will be more likely to cover the testing rather than Enterolab. Prometheus is also highly respected/well known for their genetic testing.

Laura

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Great posts!!! My question is for the genetic testing, if you did this through your pediatrician, did the pediatrician know what tests to order? My children's doctor said they do not need to be tested, but my gi dr told me they definitely DO need to be tested for celiac. What test(s) do I need to request? My five year old is going in for her annual check up soon and I want to be prepared with what exactly I need to request. She is showing no signs of celiac, but I'd like to know if it is something we need to look out for. Any additional info you can share would be soooo appreciated. Thanks! Maureen :)

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I'd like to second Maureen's request for info on what tests to ask for when getting genetic testing done. My son's checkup is next week, and although his blood panel was negative, I'd also like to have this done. I haven't heard any gastro or GP or haemotologist (and I've spoken to a few!) mention anything about the genetic test for celiac. I have only heard about it here with you guys. Maybe in Canada it's not available?

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How did you go about having the genetic testing ordered? If you don't mind me asking, did your insurance pay for this or did you have to do it out of pocket. I would like to know if my kids carry the gene, just so I know if I need to keep an eye on them. My pediatrician has ordered the celiac panel blood test for my youngest and we are waiting for the results. My two oldest do not show any symptoms and are quite tall for their age, so I don't think they have it now, but I would like to know if they carry the gene. Thanks for all your info.

runnergirl

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We just asked our Ped GI to do the gene test on DD. We don't have the results back yet, but I believe they were sent to Prometheus. I asked the GI to do this test b/c she has been tested a few times for Celiac via bloodwork and everythig was negative yet she continues to complain of tummy pain. She is 4.5. They have her on glycolax now to see if that improves her stomach pain. If that doesn't work, we may be looking at an endoscopy.

DS was diagnosed in July of last year and didn't have very obvious symptoms. His were vague and he was only tested b/c I begged his Ped to test him b/c of my issues. His Ped was shocked that he did have it b/c he wasn't losing weight, having diarrhea, etc.

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yes get your kids tested because they could have the gene for celiac disease

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My son is now 22 months. He has been gluten free since birth. He is partly b/c I am strict about a gluten free household, and my husband complies without complaint. I also, cannot knowingly, start feeding my child gluten when there are so many detrimental things that can happen. Colin was born at 28 1/2 weeks and already is behind in his development. Its only in cognitive things, but I cant give him gluten knowing that it may impair him even more.

We just started giving him soy milk, off of dairy, due to major constipation, which can be a sign of celiacs, however, he wasnt given gluten.. so it looks like he is dairy intolerant.

He is getting gene tested in June by the celiac specialist at the Childrens Hospital of Philly. It takes that long to get an appt with her as this one doc is the only specialist.

I prefer to err on the side of caution.

That is just my personal experience with it, I know first generations should always be tested.. my parents and brother had the tests done, supposedly, and they all came out negative.. some how I think there is a false negative in there, but they dont want to look into it further and I cant force them.

This again, is just my experience, you will know what to do.. and if you need to keep testing them.. then you should.

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I just used Enterolab (here in the US) for my daughter's genetic testing - insurance did not pay for it. However, for my unborn baby, I asked the ped. if he could do the genetic test when he is born (in the hospital) and he said they could either do it then or at his first appt., but he wasn't sure how so he is going to look into it. I have found (at least here in the U.S.) that yoiu have to do all the research and take the "answers" to the dr!

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TinkerbellSwt --

Can you give me the name of the doctor at CHOP? I live in Southern NJ and, since my children's pediatrician seems clueless about Celiac, I'm thinking maybe I should just make an appt for the both of them in Philadelphia.

Thanks much for for such a great thread everyone!!! I LOVE this message board :)

Maureen

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Sure Maureen.. Her name is Dr. Burma and she is actually in the Jersey branch of Chop, they have satillite (sp?) offices. This office is in Voorhees. The phone number there is 856-435-1300. Good luck! Its a long wait to get the appt as she is the only one to see, my appt is June 18th and I made the appt almost a month ago, but for me its worth the wait, in the meantime, like I said, Colin is gluten free anyway..

Good luck!!

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