20 Month Old Celiac Testing

[Apapdayton]

Hello.

I had a question and figured this board would have people with great advice and experiences. I have a 20 month old daughter. For many months she was a very unhappy little girl. It began around the time she started solid foods. Her symptoms were never classic celiac symptoms but she suffered from constipation (despite a high fiber diet) and cried constantly. She had low energy, wanted to be held constantly, cried all day and was only 5 percent for weight...despite being 80 percent as a newborn. She always exhibited some sort of pain and we just used to think it was constipation.

I decided just to try a gluten-free diet with her and within 8 days she was like a whole new kid. She was happier, had more energy and her constipation was a bit better. Through out the past 8 weeks she has been good and then every so often she will have a bad day or few days despite being on a strict gluten-free diet.

So we now would like to figure out if in fact she has celiac or iff there is just some coincidence that her mood has improved.

What tests would you suggest we do...OR should we just have her start eating gluten to see if she has a reaction? My doctor casually mentioned there was a test we could now do while she is still eating gluten-free. I just don't want to make her suffer through a blood test if she doesn't have to...but also don't want to make her suffer eating gluten again. If she could talk and tell us her symptoms it would be a lot easier!

Thanks!

[brigitam]

Would you keep her gluten free for a few years and consider testing it when she is old enough to talk about it properly? I am just going through the testing with my son now who is 4. A lot of advice on this forum says trust your instincts and don't worry about the actual diagnosis- especially considering it is difficult to diagnose. I myself wanted to do the tests because I wanted definitive answers but my son kept coming back negative even though he responds well to a gluten free diet. I am not sure it was worth the pain and trauma when I know he is better gluten free anyway. I haven't heard of a test you can do gluten free. If there is one I would have loved to do that.

[Apapdayton]

Thanks that is helpful. Maybe at tis point we will do the genetic test to see what comes back. I like the idea of trusting your gut. It does seem that doing so much testing now is just hurtful.

[tarnalberry]

What I don't like about the genetic tests is that - espeically in the US - they only test for two genes. There are other genes that have been identified as contributing to celiac (or non-celiac gluten intolerance), so you can test negative on a gene test but still have a gene that is problematic. Then, even if you do test positive, it doesn't tell you much, because MANY people have a celiac gene but many do not go on to develop celiac. So, the test doesn't really tell you much.

[shaleen]

I'm in the same boat as you. I have a 20 month old who was labeled as failure to thrive (he's 18 pounds) and after months of a gluten free diet he's completely another kid (no weight gain yet though)...but they wanted me to start him on gluten again and keep him on for 2 months before they would test for celiac disease...after a week of gluten I said, no way, it's not worth it (that's how bad he was)....whether he had the label or not, I'm not going to give him gluten again anyway so to me, what's the difference? Go with your gut instinct is what I say.

What I don't like about the genetic tests is that - espeically in the US - they only test for two genes. There are other genes that have been identified as contributing to celiac (or non-celiac gluten intolerance), so you can test negative on a gene test but still have a gene that is problematic. Then, even if you do test positive, it doesn't tell you much, because MANY people have a celiac gene but many do not go on to develop celiac. So, the test doesn't really tell you much.

[ELSmommy]

I think going with your instinct is best. My 18 mo old was tested (blood test) 4 months ago and came back positive. I already had her gluten free for 2 mos when they wanted to do the biopsy, which would entail us putting her back on gluten for 4 weeks. Seeing how while on gluten she was always miserable and projectile vomiting every day my husband and I refused to do it since she has improved significantly since going gluten free. You know what's best for your child.

[scarlett77]

I'm not sure that the genetic test will give you definitive answers, but it doesn't hurt to do it. If you want more concrete diagnosis, the most accurate testing is done while on gluten. It is up to you whether or not you want to try a gluten challenge to go down that road. Follow your mommy instinct.

My oldest son was the same age when he was FTT and we were referred to a GI specialist for testing. I had never hear of Celiac Disease before that so he went through all the testing including the endoscopy to get his official diagnosis. I was advised to not take him off gluten until after the testing was done.

Now my youngest son is sliding down the charts in growth (though not nearly as much as his brother had). We have an appointment with our GI for him on Friday. We are already gluten free so I'm thinking that maybe he also has hypothyroid like his brother and need meds for it. I really don't want to do a gluten challenge just to test him. We'll see what the GI says on Friday.

[Apapdayton]

The doctor called and she said to keep her off gluten and to bring her in for blood tests. I thought most blood tests you had to be eating gluten.

[tarnalberry]

true, but doctors seem to confuse blood test for celiac with blood tests for illnesses with respect to finding antibodies. I'd call back and get clarification (or educate them ).