3 replies to this topic

[wille25]

My son just had his one year well baby and has fallen off the growth charts and now has a trend for a downward spike for the last three appts. We went and had blood work done and his Gliadin AB IgG level is 17. No our ped wants us to go to a GI specialist. Does anyone know what the next step is and what the GI specialist will test for and how invasive the tests are? Anything would be helpful we are kind of at a confused stand still and I haven't been able to get a straight answer. Thank you so much.

[lovegrov]

Hard to say as I've always understood that celiac tests at this age are not nearly as accurate. Normally, the next step would be a small bowel biopsy by endoscopy. Not sure with a child who is just 1 though.

richard

[cherylk]

willie25, I am new to the board but have done much research over the last month. My understanding is the biopsy is quite invasive and you might not get a clear answer anyway. I personally would listen to what the GI wants and do your research before you say yes. I got my answer from www.enterolab.com. I think I have become their biggest fan. My child has suffered four years now and blood tests were all negative for celiac disease and allergies. The FACT that my child COULD go to the bathroom without days of pain and laxatives when gluten products were removed from her diet, didn't matter to anyone. (nor did the just under 3000.00 in dental bills because her teeth melted away to cavities) Enterolab has a lot of information on tests and biopsys and just keep clicking on the website and go to IntestinalHealth (from enterolab) and read all you can there as well. The team has focused their lives to intestinal health and they are up on the latest. My GI had his head somewhere and would only except the celiac disease diagnosis with a blood test. The stool (which is so easy to do) and gene test were delivered to my door and picked up from my door and there was no hospitals or needles required. My four year old laughed at having to go pooh in a container on the potty. It is pretty scarry with a little one, just get yourself educated and stand up to the doctors if you believe from your research that their information is outdated.

[angigz32]

Well I haven't posted in a long time because my son is sick alot. But I feel every sitution is different and you will just have to see what happens. My son was diagnosed at 17 months. They started out with finding fat in his bowel movement, it was positive for celiac. Than they did the blood test and it was positive for having celiac. Now the small intestine came out negitive for celiac. My son fell off the charts also, he would not eat. Only maybe a couple of bits or a couple of sips. I breast fed him for 17 months. And than the doc put a feeding tube in his nose. Now he has a feeding tube in his stomach. The feeding tube saved his life, food hurt him so he wouldn't eat enough to keep him alive.

We are in the hospital every three months for tests, celiac also comes in two's.
You can check out my son on www.caringbridge.org/co/zack.com

God Bless and Take care