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
Your daughter sounds very like my daughter. One thing I think is important to realize is that there may never be an official diagnosis of Celiac. There are so many people that have gluten sensitivity or intolerance that will never be diagnoses. The only real way to see if you are affected negatively by gluten is to go on the diet. You have to be vigilant and go for a while. I would suggest a full month. I tried the diet on my daughter but gave up after 2 weeks. But I tried again and after 3 weeks there was significant impovement.
My daughter, like yours, has experience severe constipation from 2 years on. She is 8 now and a couple months ago lost almost all control over her bladder. The doctor says this is because having a bowel movement is so painful they refuse to release the bladder because that also relaxes the sphincter. They would rather just leak their urine than go. I have had my daughter on the gluten free diet since July. Her back pain went away almost immediately however the constipation has not relented. We even checked out Tetherd Cord Syndrome because constipation, back pain, and bladder control problems are typical of this. I am not trying lactose free, gluten free. I haven't been able to commit to such a strict diet for such a small girl but she's not getting better fast enough for me. If they are undiagnosed for a while I read that they may never be able to process dairy again.
My husband and my son are also gluten-sensitive. So my whole family is on the diet. I want to have another baby and its important to be gluten free during pregnancy and breastfeeding if gluten problems run in your family.
Don't give up. It's hard and frustrating and doctors think you are crazy. I have had to change pediatricians numerous times because they give up on my child. You are really her only advocate. And most medical doctors are not trained in nutrition and won't listen if they can't do a test.
Good Luck. If you find anything useful, let me know.