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Thanks everyone for your feedback. My son was diagnosed by biopsy. It is frustrating that my son is not growing when we thought he would "catch up" in a few months. I know everyone is different, but I am sad that he is so tiny and may be the tiniest one in his class for a while.

We are going to the nutritionist at children's hospital next week and she will make sure we are doing the "right thing" at home - no cross contamination, etc. I have been careful so far, but I wouldn't be surprised if we were also making some mistakes. We do not have a 100% gluten free home, since my husband and others in our house sometimes eat gluten. I wonder if we have to ban it altogether?

His BM's are much better after we went gluten-free. That's why we thought we were doing okay. He is much better in other ways - eczema improved, better mood, etc. Just not growing!

Good tip about the probiotics - I just talked to a friend and she gives her child Benecalorie, which is a gluten free calorie supplement. I just ordered some and hope that will add some weight.

My son was dx at 13 months old. He was at 0% on his growth curve. Six months after he was dx he was still on the same curve, slightly above 0%. He is now almost 3 years old. His weight gain has picked up slightly. He's now weighs 28 pounds. I'm not sure where that will be on his growth curve. His check up is next month. He never had a growth spurt. He never outgrew shoes and clothes in a few months. He never had the amazing turn around that so many kids do. I remember feeling soooooo frustrated. I searched the forum for some stories like mine and all I could find were parents in awe at how fast their kid was "catching-up." It makes it even harder when you're being told that your child must still be getting gluten. I made my kitchen completely gluten free. I researched tooth-paste, shampoos, wouldn't let him near the catfood, never let him eat food from anywhere but home. . . It is a learning process and you probably will make some mistakes but don't be hard on yourself.

How are your son's BM's? Were they abnormal prior to being dx? Was he dx by labs or by biopsy?

I feel that probiotics really help my son's digestion. He still gets probiotics pretty much every day.

If absorption of nutrients is a problem then some supplements my be helpful. My son is lactose intolerant so he get Calcium and Vit D supplements.

My 3 year old son was diagnosed six months ago. Since then, we have kept him on a gluten-free diet and he still has not gained any weight or grown in height. I am starting to worry as the GI told us it would take around 2-3 months of eating gluten-free and he would start gaining weight.

We have scheduled a follow up appt with his pediatrician to do some more bloodwork. I am wondering how long it took for your kids to start gaining weight - after the diagnosis?

Also, did any of you find success with growth hormones or supplements? I don't know anything about these and I'm wondering why the dr's have not recommended them. My son - now almost 4 in a few months - is 30 pounds.

Thanks in advance for any insight you may have.