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 was so worried today that I wouldn't be taken seriously. And I have to credit my new doctor--that did not happen.
He ordered a celiac panel, an endoscopy, and a CT scan, along with a few other blood tests. He ordered the celiac test before I menitioned it, due to my Irish heritage. I will be done with all of the tests in two weeks! That is so much faster than I thought it would happen. He also prescribed me meds to take three times a day, dicyclomine. This has been helpful--the ER gave it to me, too.
Either way, I am going to quit gluten for awhile (possibly forever) once the testing is done. I can't thank you all enough for your knowlegeable perspective these past few days--it has allowed me to feel like I was learning something, at least, in the time that I could do nothing about my situation except wait. There's more waiting to come, so I'll probably be around.
Would you folks advise me on the initial blood tests I need to get to confirm a diagnosis? I know that sometimes it's not that simple, but assuming it will be simple, what tests do I need to request? (Appt. is Weds, 11/21.)
Thanks for your responses. I started a gluten bucket list, and I've been going through it, eating all the things I think I'll miss. For a couple of days I was feeling somewhat better, but that all collapsed yesterday (two of my favorite bakery's english muffins that were going to go stale and a 1/2 a bagel--yeah, not the best idea after all) in the big D and hives, along with an insatiable itch.
The good news is that I got an appointment with a gastro for next week, after being told I'd have to wait until January. I can't tell you how depressing that thought was--that I'd have to suffer like this until January (and beyond, assuming all the tests would not be instantaneously performed).
I am also thinking I may have to change primary care physicians, but I'm waiting until I get in to see the gastro to do so. In the meantime, I've been Googling every symptom I've had over the past 10 years or so, along with the word celiac, and I am shocked that they're all there. Even my hair color may put me at risk--is that me being insane, or is it more insane that nobody's ever connected the dots before this?
Anyway, I'm hanging in there, but not happily. There's a cloud over me, a big dark glutenous mass of a cloud.
Last week I was at an election party and drank more than my share of beer. The next day I woke up with utterly crippling stomach pains. I have had a baby, and the best way I can describe it is just like early labor. My whole abdomen was clenching up repeatedly, all day. I thought it was a very strange hangover, but it didn't go away the next day, or the next, and so on. It's not nearly as bad as that first day, but over the course of this time I've also had constipation, diarrhea, and vomiting. Yesterday I decided I would cut out wheat, and it seems to be helping--perhaps.
I have been to the MD to have my gall bladder checked twice in the past year (no GB problems), once for knee pain, and once for a crippling lethargy that was putting me to sleep every afternoon for hours--I was missing picking up my daughter at school! I was diagnosed that time with low vitamin D levels. I have also had wandering joint pain--shoulders, ankles, hips, knees, wrists. I get migraines. My daughter was small at birth. I have ADHD, anxiety, and occasional depression. I appear to have very mild anemia and low calcium, according to today's bloodwork.
After seeing my MD today, I was sent to the ER to rule out appendicitis. I knew I didn't have it, but I hoped they'd test me for celiac. They couldn't, but they gave me Bentyl, which seems to make me nauseated, but has helped the pain quite a bit.
Tomorrow I'm going to wade through the referral process and (I hope) get in to see a gastro. I am so sad at the idea that I might have to give up bread that I have been considering going out for a slice of pizza before the guillotine falls. But the past few days have been so awful that the idea is only mildly mouth-watering.
I know that to a seasoned celiac I must seem whiny and naive, but I've gone the route of difficult diets once before in my life, and it was--difficult. To give up my very favorite food forever just seems foot-stomping unfair to me, and it makes me want to crawl in bed and never eat again.
I don't know what I want from any of you. Solidarity? Forgiveness? A get-out-of-celiac-free card? Obviously I want to talk about it, though.
Thanks for listening. Any guidance is appreciated.