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.
About 10 days ago I think I ate most of a wheat tortilla (the restaurant stuck to their story that it was a corn tortilla like I had ordered, but I don't believe them - I'm pretty sure it was wheat). Nothing happened in the first couple of days, then I developed intermittent chest tightness, which was one of my primary symptoms before my diagnosis, the others being bloating, food sitting like a rock in my stomach after eating, exercise intolerance, and weight loss.
Anyone else get chest tightness as a symptom of being glutened? I haven't felt this symptom since I became very strict with cross-contamination.
I had 23andme testing which showed I have genes DQ2.5 and DQ8. When I learned this I decided to stop eating gluten to PREVENT getting celiac, but didn't worry about cross-contamination. A year later I got sick, and eventually had an endoscopy which showed Marsh 1. My blood tests were negative, as one would expect for anyone eating gluten-free. My gastroenterologist told me I could either decide to live like a celiac, or do the full 12-week gluten challenge. I cleaned up my kitchen and started being very careful with eating away from home, and my symptoms went away.
The beginning of your story sounds very much like mine. I stopped eating gluten regularly when I adopted a mostly paleo diet years ago (bonus: my lifelong canker sores disappeared!). When I got 23andme testing done and learned I have both high-risk celiac genes, I stopped eating gluten altogether, thinking I couldn't trigger celiac if I didn't have gluten exposure. But, since I didn't have a celiac diagnosis or symptoms, I wasn't careful about cross-contamination.
Then I got sick. My symptoms were vague: bloating, food sitting like a rock in my stomach after eating, exercise intolerance, weight loss, chest tightness. I had a bunch of tests, tried omeprazole, and eventually had an endoscopy. Because I hadn't eaten gluten in a year, I didn't expect any results suggesting celiac, but sure enough, my biopsies came back as Marsh 1: inconclusive, but all the other reasons to cause this result had already been ruled out or were very unlikely. I then had bloodwork for celiac, which was negative, as expected for anyone on a gluten-free diet. At this point I was sent to a gastroenterologist, who said she could not definitively diagnose me with celiac, and that my options were either to assume I have celiac and live like a celiac, or to do the full 12-week gluten challenge and then repeat all the testing.
i didn't want to take the risk of triggering another autoimmune disease by doing the gluten challenge, so I cleaned up my kitchen, replaced my cutting boards, cast iron pans, and anything plastic or silicone, and confined gluten to one corner of the counter. I started being the annoying person at restaurants and potlucks asking a thousand questions. And my symptoms went away.
i still don't know whether I have celiac. I struggle with the restrictions it places on my life outside of my home (travel, social life). Periodically I wonder whether I shoukd just do the gluten challenge so I know. But I'm afraid of the possible risks.
Your allergist did you a great disservice my telling you to go on a gluten-free diet without testing you for celiac. But that ship has sailed. At this point I would say your choices are the same as mine: either do a complete 12-week gluten challenge and then retest, or decide to live as if you had a firm celiac diagnosis. It can be a tough decision. Good luck and I hope you figure it out and get better very soon!