Need Advice For Screening 18-Month Old

[valeriev]

Hi, I'm new here, so thanks in advance for your help. My husband has celiac (manifests as dermatitis herpetiformis) and our son, who DOES eat gluten, is almost 18 months old. Unfortunately, he has been at the same weight for the last six months. As an infant he was in the 80th percentile in height at 75th in weight, but those numbers have been steadily decreasing, and based on the home weigh-in we conducted I'm sure that at his next checkup he's probably going to be below the 10th percentile in weight. However, other than his failure to gain weight, he is asymptomatic--he has no diarrhea or constipation, and he is a very active, social and happy child with a good appetite.

We are determined to have our son tested for celiac as soon as possible. I have been informing myself about the antibody and genetic tests, but the amount of information is a little overwhelming, and at the same time unhelpful! My questions boil down to these: (1) Can/Should we get these tests done through our pediatrician, who seems well-intentioned by not particularly informed about celiac, or do we need to take him to a pediatric gastroenterologist for these tests? (2) How accurate are the antibody tests on an 18-month old? (3) I have read that not all laboratories are created equal in terms of celiac testing. How do we make sure that our son's sample is sent to a lab that is most thorough?

Thanks in advance for your insights, folks!

[lillysmama08]

Hi, I'm new here, so thanks in advance for your help. My husband has celiac (manifests as dermatitis herpetiformis) and our son, who DOES eat gluten, is almost 18 months old. Unfortunately, he has been at the same weight for the last six months. As an infant he was in the 80th percentile in height at 75th in weight, but those numbers have been steadily decreasing, and based on the home weigh-in we conducted I'm sure that at his next checkup he's probably going to be below the 10th percentile in weight. However, other than his failure to gain weight, he is asymptomatic--he has no diarrhea or constipation, and he is a very active, social and happy child with a good appetite.

We are determined to have our son tested for celiac as soon as possible. I have been informing myself about the antibody and genetic tests, but the amount of information is a little overwhelming, and at the same time unhelpful! My questions boil down to these: (1) Can/Should we get these tests done through our pediatrician, who seems well-intentioned by not particularly informed about celiac, or do we need to take him to a pediatric gastroenterologist for these tests? (2) How accurate are the antibody tests on an 18-month old? (3) I have read that not all laboratories are created equal in terms of celiac testing. How do we make sure that our son's sample is sent to a lab that is most thorough?

Thanks in advance for your insights, folks!

My daughter has celiac disease and we had her tested at 18 months. All I know is they tested her ttg levels which was part of what they called a "celiac panal" and her levels we 33 which is high. They then did a scope which should some damage to her intestine. They said that is the only way to be 100% sure. So then everyone in our family got tested and we found that the genetic test didnt test right. Also most insurance does not cover a genetic test but it does cover the celiac panal. Our pediatrician sent us to a specialist who ran the labs for us. Since she was diagnosed one year ago her ttg levels are now 2 and she has gained 6 pounds. So I guess if you want my opinion I would go to a specialist and get the test they suggest. I would say if there is a Children's hopsital around go to them I would think they would have the best labs possible. We live in Iowa and go to a place called Boys Town Pediatrics and they have been great about it! I know its overwhelming but I been through it so if you have any questions my email is superchic_02@hotmail.com. Good Luck!!

[MaryannG]

Hi, I'm new here, so thanks in advance for your help. My husband has celiac (manifests as dermatitis herpetiformis) and our son, who DOES eat gluten, is almost 18 months old. Unfortunately, he has been at the same weight for the last six months. As an infant he was in the 80th percentile in height at 75th in weight, but those numbers have been steadily decreasing, and based on the home weigh-in we conducted I'm sure that at his next checkup he's probably going to be below the 10th percentile in weight. However, other than his failure to gain weight, he is asymptomatic--he has no diarrhea or constipation, and he is a very active, social and happy child with a good appetite.

We are determined to have our son tested for celiac as soon as possible. I have been informing myself about the antibody and genetic tests, but the amount of information is a little overwhelming, and at the same time unhelpful! My questions boil down to these: (1) Can/Should we get these tests done through our pediatrician, who seems well-intentioned by not particularly informed about celiac, or do we need to take him to a pediatric gastroenterologist for these tests? (2) How accurate are the antibody tests on an 18-month old? (3) I have read that not all laboratories are created equal in terms of celiac testing. How do we make sure that our son's sample is sent to a lab that is most thorough?

Thanks in advance for your insights, folks!

[MaryannG]

I would go to a gastro. Most peds don't know much about celiac. In fact, when my daughter was first tested her first gastro read the results wrong, we went to another one because I didn't feel like I was gettin anywhere by just giving her plenty of fruits and veggies, so the second gastro caught the mistake. So not all gastros are even perfect! Even if she shows no signs, she will need to continue to get tested every few years, because this deisease can appear at any age. My daughter was diagnosed at 20 months, and in my opinion although it is very hard to tell such a young child that she can't eat something, it is much easier in the long run because all they know is gluten-free food. My daughter now at 3 asks if something is gluten-free and will say she can't eat it if its not. She has aquired the taste and my guess is she wouldn't even like regular food anymore! She even knows if the box or bag doesn't look like her typical food, she'll tell me she can't eat it. so diagnosing early was the best thing to happen to me in the long run!