Symptoms & Testing For 18Month Old

[Laennie]

We came to the conclusion in November that I have Celiac disease. I had a negative blood test but on doctor recommendation started the gluten free diet. I had an amazing difference. Since I had a majority of the symptoms we came to that conclusion.

My son is 18 months old now and I worry about if he might have the same problem. He's always been in the mid to high teens or low 20s in the percentile for his age. He eats fairly regularly but he's very active. He seems pretty healthy overall. He's always been a fairly easy baby, sleeps through the night, generally well behaved. Every now & then we have some times that he has a lot of tantrums over nothing & just becomes completely unreasonable or unconsolable. Usually it's always in the evening & on those same nights we have problems with him sleeping. We usually think it must be a teething thing but sometimes we're really not sure what's going on.

Ever since he was a few months old he has seemed to go back & forth between constipation & diarrhea a lot. He might have a day or two in between of normal stool but it's often one or the other. His diet is usually fairly consistent. He gets some fruit every day and then smaller portions of whatever we are eating. He also loves to snack on cookies or crackers, or jello or yogurt.

Monday was his first check up since we found out about me so I mentioned my concern to the doctor mainly about the stool. I've read somewhere about some behavior things with small kids but I don't know if he would even fall in that category. Anyway she said we could run a celiac panel on him. She gave us the lab slip for whenever we were ready.

I just want to know if it's worth putting him through the trip to the lab right now or if I'm just being paranoid. I hope he doesn't have it but if he does I want to make sure we get it diagnosed early so he won't have to go through everything I went through. My husband doesn't want to put him on a gluten free diet if he doesn't need to be on one & I'm pretty sure that unless we get a positive somewhere the grandparents definitely aren't going to want to or follow it and he spends a lot of time with them.

A month or so ago I looked at the tests on Enterolab's site & saw that they do a gene test with only a mouth swab but it's pretty expensive. It said on there something about some insurances might pay or pay for part of the testing cost or something. Right now we're having a hard time financially so we haven't done it yet.

I'm looking for some insight, advice & if anyone has done any of the Enterolab tests I'd love to know if their insurance paid any part of the cost of the test.

Thanks!

[MacieMay]

I think it sounds like your son is OK. My daughter (22 months)is not Celiac but glutent intolerant. She would get the WORSE diaper rashes and she would literally poop 6 - 8 times a day. She would cry in her sleep. Her belly would get distended and she was lactose intolerant. Just to name of few of her symptoms. Once we took gluten and lactose away it all got better. We have since introduced milk products and she is tolerating it much better. I think her GI system has had time to heal.

I think it might be a good idea, where you are Celiac, to do the blood work on him, anyway. Eventhough, typically Celiac panel is unreliable on small children (we had two negatives). Celiac is heredity and although he doesn't seem to be showing symptoms, you might want to have him checked every couple of years. Do you have health insurance? Our health insurance paid for gene testing. I asked GI to do it, I wasn't sure if insurance was going to pay for but I decided to take my chances. They did! We were lucky!! If you decide to do the blood work keep a copy for your records.

good luck! I hope this helps!

[Laennie]

Thanks so much for responding. I really value the input.

The main reasons I've worried about him having it is because it is hereditary, he's kind of underweight & his stool never seems to be normal, it's either C or D. Looking back now we realized I had symptoms since Junior High at least but mine were mostly neurological so we never figured it out. It wasn't until after I had my son that I started getting really bad GI symptoms. As it was the specialist never figured out what was wrong with me. I got an IBS dismissal, it was my mom that found an article in the paper that lead us to this realization of what was wrong. I went through some really bad times/stuff before we figured it out. I fall all the time, broke left foot twice & almost a year ago break my right leg so bad I'll probably never walk normal again or ever be able to run again. I really don't want him to have to go through all that stuff if he has it, I want to find out right away & get him used to the diet.

I know it might seem a bit paranoid. I really hope that he doesn't have it but you know how it is being a parent, you constantly worry about things.

We do have Health Insurance. I just hate for him to have to go through giving blood when I know there's a genetic test that is just a mouth swab that would tell us with more reliability if he even has a chance of having it. For me doing the blood test was no big deal even though I knew the 20% false negative rate. With him & the fact that he's not really having any majorly negative symptoms, I guess I'm just having a hard time justifying putting him through that pain to myself.

Knowing that your insurance paid for the gene test though gives me some hope. Thanks a lot! I'm always looking for stories, input & info from people who've gone through these sorts of things.

[CrunchyChristianMama]

I would start with a food journal for him. Try it for a month and see if the behavior or stools tend to happen based on what he's eaten.