This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc. Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
I would suggest you do two things. A: Remember that caring for your children, and discussiong their medical needs in regards to the latest research is NOT crazy. B: Quit letting your family members opinion interfere with how you care for your children. Chances are you are doing an awesome job, esp, if you are reading about biopsy dyes, etc. I have a ton of family that seems to disagree with what I talk about regarding my kids health. My Mom told me that my youngest daughter didn't have Asthma, and then cried a few months later when she watched my DD have an attack and realized she was very wrong. Nobody is with your kids as much as you are. If it helps your child, then keep it up, regardless of what the biopsy results say, esp given the feedback above about consuming gluten before the biopsy.
There are a ton of issues which can cause failure to thrive in infants. I think you are doing an excellent job finding a new GI and working so hard to offer her solids before the Pediasure. There are some pretty strange allergies out there, aside from the eleven you hear about all the time, and its hard to diagnose allergies in infants (Corn, Oats, molds...etc.) . If you are waiting on test results for the EEG and an MRI my course of action would be the following; keep up the pediasure and offering solids, and pretend you are a nurse. Keep a chart/ notebook of her intake and her temperature three times a day. If blood sugar is an issue, start taking that as well. Sending you hugs and support.
This is so nice to hear that others have fallen in the false negative category with children. My middle daughter went lactose free at 11 months, and it took me three doctors, countless 'five diarrhea diapers a day' (at 3 1/2 years), and arguing with our current (and very understanding) doctor about diet to get him to order blood panels for Celiacs. Then she tested negative. We have family history of Celiacs, with adult diagnosis on both sides, though only I show any indication of symptoms and have never been tested. My DH and I decided to try the gluten free diet anyways. Within two months, even given some mistakes, Nyobi slept less, was happier, spoke more, moved more, and didn't cry when asked to walk for longer than five minutes.
Oddly enough, there was a pimply rash on the upper part of Nyobi's and my youngest daughter's arms. It went away, slowly, as well. so happy! And yeah, I guess the only definitive result those tests give is a positive.