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
Where can I buy gluten-free stuff?
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I am going to Mass General in Boston to rule out celiac. I picked it because one of the docs is a lead researcher and it is a 5.5 hour drive. Plus they did a virtual visit with me which was great.
Admittedly, my first actual visit was short and it felt like a long haul for a quick 20 minutes. I spent about $250 on hotel, gas, food and tolls. I stayed right outside of Boston and booked the MGH rate. I am looking at other options if I go again. I was gluten free at the time so there was not a lot to do at the appointment. My insurance also would not pick up $125 of the visit for some reason.
I cannot give you an overall about time, money etc. as I am still waiting to hear if we are doing another endoscopy. I am hoping they rule it in or out as it has been unofficially diagnosed by two local docs and it is starting to get very frustrating for me as others say it is not celiac and I still feel badly. I do really like the nurse who calls me. She is very receptive.
I can keep you posted!
I also looked at Columbia as I live in NY but they did not accept my insurance and Boston is actually just as easy of a drive for me.
There is a standard called the Marsh Scale that is used to rate the various levels of damage to the gut. While the lighter damage levels might not show up to the naked eye, the worst damage levels are obviously visible. The worst levels result in what the call "scalloping" referring to the appearance of the gut lining.
Isn't this great, you are learning new stuff already!
Welcome to the forum Kathleen!
Do not worry. Didn't you say you talked to a nurse? She might not even know the procedure for obtaining biopsies for celiac disease. She might just be thinking endoscopy. She might even be new to the practice. Who knows? Print off the U of Chicago's info and call or email tomorrow with your questions. If you do not get an answer, then talk to the GI when you see him on Friday. But you need the biopsies. Villi damage is too small to see! There are some other signs....but biopsies are key.
I take Jarrow Probiotics and eat coconut yogurt daily. For vitamins I use Liquid health, they have them in liquid form you just measure into a glass of tea or juice and drink it.....BIG deal for me since I already take 4-9pills with each meal.