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 SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan 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-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs 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 BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
I started seeing doctors when I was 15 years old for severe and debilitating joint and muscle pain (among a myriad of other gloriously awful symptoms), it was ruining my life before I even really had one! I was tested over and over again for RA (despite the several negative tests before each one, doc thought, well, let's try ONE more time...), one doctor told me at 16, it's just growing pains, you'll grow out of it. At 18 a doctor told me, well, you're abnormally flexible (I was a gymnast for years before I hit puberty and it all went downhill from there lol) and that's the price I had to pay for that "gift". At 20 a doctor I hadn't seen before put down her notes, looked right at me and said, "I'm not prescribing you any narcotics, so know that before we proceed"...the best part is I wrote on my medical history form, I don't take opiates because I can't stand the effect they have on me... The last doctor I saw before I gave up and researched, reached out to the gluten-free community and then ultimately went gluten-free on my own, well, the last doctor responded to my multiple requests to be referred to a GI specialist for testing (my insurance required that darn referral) by saying, "you're more likely to die in a plane crash than have celiac, that's definitely not whats happening here. You just have fibromyalgia and IBS and depression and ADHD, have 6 prescriptions and call me in the morning." ...well, that last part wasn't a direct quote, but pretty much. I've pretty much given up on doctors for help diagnosing my issues, I get my anti-depressant/ADHD meds from him every month and call it a day. Western medicine, by a large majority, is a straight up joke!! I'm coming up on 4 years gluten free and have never felt healthier in my life, so they can take their "clinical" diagnosis and shove it you know where, no one wanted to help me when I needed it so I fixed the problem before they got around to testing me for it. Absurd!
I am in almost the exact same boat, except I'm just shy of 4 years gluten free and when I wanted to get tested I couldn't find a doctor who even knew enough about the disease to be willing to test me. They told me, I was more likely to be in an airplane crash than have celiac. So finally, at 23 after an entire decade of rashes, mysterious and debilitating muscle and joint paint (and negative arthitis tests FOUR separate times), chronic D, bloating and cramping, severe bouts of acid reflux, ADHD and depression diagnosis and long term treatment for both, sporadic numbness in my hands/fingers/toes and horrible headaches, and a diagnosis of Fibromyalgia at 21 with an Rx for Lyrica (which is HORRIBLE and should never be prescribed long term), I decided doctors clearly didn't have the answer so I went gluten free all on my own and I have no doubts in my mind I'm a Celiac. Every woman in my family has severe and chronic digestive and long term pain issues, although they think I'm just a hippy so they refuse to get tested or try the diet... Anyway, I rarely look back and wish I had gotten that piece of paper validating what I already know, but tonight a close friend of mine insinuated that since a doctor never diagnosed me, it was probably all in my head. People can be so insensitive and cruel. It's really nice to hear there are people out there who are going through the same thing as I did/am, that piece of paper doesn't need to define us and the nay sayers are welcome to listen outside my bathroom door the day after I eat a few bites of some gluteny and delicious lol