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.
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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
Where can I buy gluten-free stuff?
Support this site by shopping at The Celiac.com Store.
Thanks for the responses raven and cyclinglady! I guess we just have to wait. Is it wrong that I want there to be no question that its celiac? She has had so many symptoms for awhile now--seemingly increasing--but I want there to be no question in her mind that she needs to be gluten-free--you know?
For now we are working on eating gluten-free but I haven't really tackled the whole cross-contamination thing yet and looking into my freezer, fridge and pantry I have a decent amount of gluten that the rest of us will eat. Then I guess I'll decide how gluten-free the rest of us should be.
On a side note--the gi ran a bunch of tests prior to the biopsy--I haven't seen the results--but they mentioned over the phone that her white blood cells were high--maybe due to celiac?
I could be wrong but Methotrexate is an immune suppressant so it may affect Celiac testing. I have seen this mistake made with other people with RA.
It may be that the only way you will know if it will help is to continue eating gluten free for awhile and see how well it does with the pain levels you have. Or...have the biopsy. But, again, will the medication affect that also?
YES! Some of us who have problems with gluten do not test positive to celiac tests. There is a term for this, non celiac gluten sensitive NCGS and this could explain your symptoms. Having said that, it would be a good idea if you hunted down the actual results of your celiac tests and posted them here. It's possible that your doctors didn't perform the full range of tests and some celiacs only test positive to one of these.
I would first double check on the tests, but once that's resolved you could keep a food diary, a very simple not of what you eat, when you eat it and how you feel. You then introduce a new food perhaps one week at a time and monitor the results.
I would start with dairy but I don't know that there's a right or wrong answer.
Best of luck. I think regardless of testing you've probably found an answer and that you will probably want to stay gluten free. Either way you've found a good site and you will have lots of support if you need it