"experts Needed"

[taterbug]

WOW - never heard of celiac disease until 20 month old is failing to thrive (20 lbs and counting, backwards) and gluten seems to be final diagnosis (based on blood work and symptoms - endosocpy was inconclusive). Every web site I have been too about celiac has been loaded with valuable information for us. Now, calling all parents who have young children with celiac disease - what are your tips? Easy enough right?! I want to put 100% energy into her diet and getting her healthy. Already joined local support group and going to hear Danna Korn next month. I feel overwhelmed, same as you have felt I am sure. We are just happy to have a treatment plan after 2 months of testing everything from cystic fibrosis, renal tubular acidosis, abnormal kidney, metabolic issue, etc... Thanks! Your help and comments are greatly appreciated!

[ashlee's mom]

I am so glad you were able to find out what is wrong and now can eliminate gluten! It sounds like you are on the right track! If you are going to see Danna Korn, I assume you have already read her book! That helped me a lot. I also use the Incredible, Edible, Gluten free cookbook for kids a lot. The good news is that even though this is all overwhelming now, it will be second nature soon. The not so good news is that it will probably be frustrating until then!

Some questions so we can help you better...Will your whole family be gluten-free or just your daughter? We are mainly gluten-free, but we adapt things so that they are similar where necessary. Like if we are having spaghetti she has her own noodles. What kind of pots and pans do you have? How well does she eat? Do you need suggestions on trying to get her to eat more?

Anyway, good luck, and hang in there and know it will get easier! It was explained to me like learning to drive. It is overwhelming at first, but then it gets easier. But the minute you stop paying close attention, watch out!