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 Celiac.com's FREE weekly eNewsletter
What are the major symptoms of celiac disease?
Celiac Disease Symptoms
What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic)
Celiac Disease Screening
Interpretation of Celiac Disease Blood Test Results
Can 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-Free
Is celiac inherited? Should my children be tested?
Ten Facts About Celiac Disease Genetic Testing
Is there a link between celiac and other autoimmune diseases?
Celiac Disease Research: Associated Diseases and Disorders
Is 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 Beverages
Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?
Where does gluten hide?
Additional Things to Beware of to Maintain a 100% Gluten-Free Diet
What if my doctor won't listen to me?
An Open Letter to Skeptical Health Care Practitioners
Thank you! I have been considering lactose, though I'm reluctant to remove more things from her diet. She has not had the classic lactose intolerance symptoms of diarrhea, gas, or bloating, though I know she could still have trouble with it.
I did not call the manufacturer about the medication but it is listed as safe on glutenfreedrugs.com. It was prescribed by a pediatric GI who specializes in celiac. The first question my daughter had for the doctor was whether the medication is gluten-free, and she told us it was.
cyclinglady, I think Joseph is hoping to exclude celiac disease. I feel for him, as I also had a hard time accepting my daughter's celiac. I had this gene test done hoping our GI doctor made a terrible mistake. But now I have triple prove that my daughter really does have it!
I agree with you and others, that if biopsy confirmed celiac disease, you do have celiac disease. (But on occasion, doctors can be wrong, right?)
However, I have a distant relative (not related by blood) who thought she had celiac diease for 10 years (no biopsy done), lived a strict gluten free life style, but still suffered from health issues, ended up in the mayo clinic, and found out that she did not have celiac. She did not have the celiac gene.
Our doctor ordered the Prometheus Celiac Plus test for us. It is some sort of in depth celiac blood test. This test report showed which celiac gene my daughter has.
I think you can ask your GI for a celiac blood test with EMA. When I asked for the EMA test, we got this Celiac plus results back. I believe Prometheus is the name of the lab.
Our insurance paid for this test. If your insurance won't pay for it, I know there is a lab in Colorado that offer this test for a few hundred bucks. You have to google for it. I forgot their name.
Why? Some 35% of the population carries the genes that could develop into celiac disease. But only a few actually develop it. It is used to exclude celiac disease and not to diagnose it. There are some outlier genes too that have been discovered recently, so the gene test is not perfect.
My daughter has tested negative on the antibodies test. She will have to get retested in the future. But we will not get the gene test. It may impact her ability to get life insurance or maybe even health! Just something to consider.
It will turn around, but it probably is going to take more time. Yes, adhering to the gluten-free diet is critical, but what doctors fail to tell you is that is can take time for antibodies to decrease. For some it is a few weeks and for others months to years.
It sounds like you are doing everything right. Remember, her gut is damaged and eating anything can hurt to digest. You might consider taking her off dairy for a few weeks until you see improvement. Then add back in starting with products with the least amount of lactose (e.g. yogurt). Many celiacs are temporarily lactose intolerant. It might help with the nausea. When I accidentally get exposed to gluten, I stick with soups and stews, even cooked fruit, like applesauce because it hurts to eat!
Are you sure the medication she is taking is gluten free? Did you call and confirm with the manufacturer? Did she have nausea befor she was diagnised? The side effect of this medication is nausea. Did the GI prescribe?
Hang in there!