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 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?
Support this site by shopping at The Celiac.com Store.
Kaiser offers the full panel, but a primary care MD can not order it -- only a GI. Again, a visual is not needed. Damage is usually severe if it can be seen visually (e.g. Scalloping, etc.). Villi are microscopic though.
Search through the Kaiser directory and find one who has some mention of celiac disease in his bio. Now, that you have been referred to a GI, you can schedule another appointment on your own. Wait first for the pathologist's report. They might not put it on the patient portal, so get a hard copy for your records. If it is negative and they took four or biopsies, you will have your answer. Then you can consider trialing the diet. If they did not take enough samples, ask for the DGP and EMA tests, including the control test IGA deficiency (which affects 10% of celiacs, but do not quote me on this). You could wait a few years until you think damage is severe enough to find. celiac disease can be hard to diagnose. It can develop at anytime. Don't forget you might have a gluten sensitivity too and not celiac disease.
Kaiser responds well to requests in writing. Try the patient portal first before a registered letter. If they are not following the standard level of care, they are at risk for a lawsuit. Be nice. Say something lame in your letter like, "We had such a nice short visit, so I forgot to ask ....blah, blah, blah."
My own relatively new PCP is still learning about celiac disease. That is okay. At least she has an open mind.
A quick update: I emailed my primary doctor and she is on the same page as the GI doctor, saying the Endoscopy looks normal. Even before we've gotten the biopsy back.
By the way, I should mention I'm dealing with Kaiser in the Bay Area, CA and everything I've found about Kaiser on these forums is horrible and similar to my own experience.
I specifically asked about all the components of the full celiac panel and that I would like to get it and all she said was: "The lab tests are not perfect. Although they may indicate an increased risk for celiac, they are not as specific as the biopsy." So, now we should just ignore the positive IgG? How am I supposed to know if I'm IgA deficient if they don't test for that?
I replied and asked again and she said that Kaiser doesn't offer the full panel. Why not? And I said I want vitamin and iron tests and no reply to that yet.
Thank you so much for all the help and support you have given me. I cannot thank you enough.
I am ever so sorry to post again here but wondered if I could check with you about this. When at work, I very rarely get chance to eat a lot and so have always been eating the Milky Way UK bars, which I believe contain gluten or barley. I usually have around 6 of these as they tide me over until getting home. I also have two slices of bread on a morning. I was wondering whether this would be sufficient as I am worried in case I haven't had enough gluten?
Thank you for everything and I wanted to apologise for being a nuisance on here.
I appreciate your response and assistance getting " moved to my own thread" thanks so much.
I do have the results of my labs they took and am unsure which labs are which so I will try to attach them and perhaps someone can help me decode them.😂