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 don't know if you have abdominal pain, but I did, intense pain actually that landed me in the ER three times before being dx....the biopsy was actually enjoyable for me!!! It was the only time that I was pain free before I started slobbering on the pillow and when I woke up!
Yes its uncomfortable knowing what they are going to do, but the sedative is wonderful (if you have pain)!
Ive been gluten free since March, and where I hardly used to eat at all, now I eat constantly! I just can't stop. Gaining weight like crazy which I can afford a bit but not as fast as Im putting it on. Last night had a huge dinner of gluten-free chilli and then before I went to bed, two more bowls. Bad, but I was sooooooo hungry!!!!! I hope this stops soon too.
Tee hee hee "Gloating" woops sorry....
Maybe my body is going through withdrawal because I now smell like BO (sorry TMI) ALL the time, no matter how much I wash and "deodorize" and Im breaking out with acne that I never had a problem with either!?!? Headaches along with pain today, didn't eat much because I just don't want to puff up like a lump again, just a bit of gluten-free banana bread that I made.
Did talk to the big children's hospital today re my kidney issues, and was 'advised' by someone that I need to go to an emerg in the city as opposed to my 'wee town hospital' when I have the pain and sediment in my urine, she dosn't think it has ANYTHING to do with the celiac (FINALLY someone who believes me!!!!!) They said that alot of the small town docs deal with alot of wackos that read about symptoms online and suddenly they turn up with this pain too....hence the AD meds, but she said Im not doubting you, your pain is real. Such a breath of fresh air to hear that and not be made to be a headcase!!!!!!!!!!!!!! Im going to my doc to request a copy of the urinalysis, so I have it with me when and if I have to go back to emerg. Im arming myself with the info that my GP HAS but REFUSES to acknowledge!
Lisa, granted I have reintroduced lactose, but even after eating a bowl of gluten-free cereal with lactose free milk during a week of lactose free, same thing!?
I don't understand why Ive never had a problem with lactose before, why now? Although I am a cheeseaholic, I havn't eaten any, the most lactose that Im being exposed to is in indrediants so Im not gulping down glasses of milk, or eating cheese like I used to (unfortunately!).
Its all very confusing...This morning Im still bloated and terribly gasey, embarrassing to say the least.
I have tried the papaya enzyme but thats about it...I will try those...I still look like I swallowed a pumpkin...not sure what else Id have an intolerance to, and why now that Im on the GFD!? Never had this before. Oh well....Ive gotten over my cravings for junk, and have some gluten-free stuff that I really like, so that part is better, but man I wish this pain and bloating would go away!!!!!!!!!!
Everyone out there who has been gluten-free for a while....Every single time I eat something now, I end up with abdo pains, and I look like Im six months pregnant!?!? This didn't happen before I went gluten free. My stomach literally looks like I swallowed a basketball, and the pain....OMG! It goes away after quite a few hours...had gluten-free cereal for breaky with lactose free milk and woop there it was!!!!!!
This is getting out of control, making things (clothes) very uncomfortable even making me short of breath! Its been since March 29 that Ive been gluten-free, and this bloating garbage started a few days ago. I havn't glutened myself so its not that....I can't take anymore with already having kidney pain still.... Someone tell me this is normal?????
That would be nice to have a proper support group but at least this way, we can support each other the world over! Just think of all the people who would be left out of the group because they couldn't get wherever!
Something needs to change in terms of doctors! They need to change. I have been through it with my son and his complete team of docs and with my own docs. They don't think or they don't hope, that you'll research stuff, join an online group or even be informed, and I think when we go in and say hey check this, it just points out that much more their inadequacies! (sp?). They get all pissy I think because they are secretely thinking, "Hey why didn't I think of that??". LOL Hey ya gotta laugh about them, they can't know that we are crying over them!
I was just dx in March and have been gluten-free since then, and although everyone says its a good idea to take yourself off dairy, I can't do it! Im a cheese-a-holic, and used to be a bread-a-holic, its bad enough the bread is gone, can't do without the cheese! I did buy the lactose free milk, but have since switched back to normal milk, Im so weak, have no self control!?!?
Hopeless, thats what I am.....If you can do it though all the power to you, I hear its the right thing to do!
I so hear where you are coming from!!!! Ive already posted my experience as of late with doctors...and you sound soooooo like me! I do though have my families full support, my hubby even comes home from work with gluten free treats for me, so thats different.
But I also had a melt down at my doctors office last week!!! I just broke down and blubbered like a baby because now that I have been dx with celiac, EVERYTHING in the world that is or could ever be wrong with me, is the celiac and nothing else!!! Ive had three emerg docs treat me like a complete idiot!!! To the point where I refuse to go back! They even told me that when I had blood in my stool that there never was any!?!? Im so sick of doctors telling me that Im a headcase, no wonder so many of us are dx with depression, if some of these docs did their jobs then we wouldn't have this problem! Rrrrrr.....
Im to the point now where I just don't care anymore, I will live with pain that is in my kidneys and possibly gall bladder pain, and until I actually pee out a kidney or my gall bladder bursts, I refuse to see another doctor.
We gotta stick together, all of us celiacs and apparent headcases! Someday the world will get it!
Sara2200, I was dx on March 27th this year, and have been gluten free since...I have MANY of the same symptoms that you do too. Running upstairs to grab something and by the time I get there, whoosh its gone!?!? I love reading novels, and I just finished reading one last night that was 600 pages +, a who dunnit, but the time I found out "who did it" I couldn't remember that particular person, making the whole book redundant. I don't know if my problems are celiac or not, but I sure hope that continuing on the GFD that they will subside. I just figured that Im getting old! LOL 39 yrs OLD! Have had this for a long time though, and I totally get how frustrating it is. It affects your relationships and everything.
I agree with everyone else, get the bloodwork done BEFORE you go gluten free...then you'll know for sure. I never thought in a million years that mine would come back positive, but there it was! Its worth finding out, if even just for your peace of mind.
brkr4evr....good for you, I hope this takes care of your pain!!! I also have pain under my ribs, and again when mentioned to my doc told don't worry about it, its the celiac, stay on the diet....
May you have wonderful health and no more pain now that your gall bladder is out!!!
Peter... You are obviously well informed, and have done alot of research...but for those of us who are newly diagnosed, we RELY on those with the education (pharmacists/docs etc) to help find safe medications etc. Even though they may put all the ingrediants on the lables alot of the terms are vague. Im still having trouble dealing with trying to decipher ingrediants and knowing what is gluten-free and what is not. If we can't even rely on those who are supposed to know, then it makes for a very hard journey. I understand that maybe pharmacists don't learn about celiac, but their blatant disregard for attempting to learn is aggravating and dangerous to say the least! They need to be more willing to help us celiacs investigate things, and to help find out for us what is safe and learn WITH us. In any job Ive had Ive always been willing to learn, knowledge is saftey in this case and when dealing with meds, saftey would be number one...at least in an ideal world. I was a pharmacy assisstant to two different pharmacies, and if someone had a question re something I didn't know about, I would find out, and not stop until I did. Maybe its an ego thing, they can't admit that they don't know it all!? THEN LEARN!!!
Yeah it feels like that lately. Today for Easter my family was here, and I stared at my mom's famous German strawberry cake, but refrained from eating it...didn't want it because again my kidney hurt so bad I just sat at the table with a long face while my family argued over who I should go to see next. My husband wants to take me down to the city to the major trauma hospital, but I would feel so stupid walking in there with a pain in my side and cloudy urine....even armed with results from my previous urinalysis...if they hear I have celiac it will surely be the same if not worse there since they deal with the worst of the worst, poor broken people. I just couldn't deal with them telling me Im a headcase, a liar etc....or saying its the celiac go home and stay on your diet....
Im very disillusioned in general with healthcare professionals....This too shall pass Im sure.
Happy Easter to my new found friends!
Not ALL the ingrediants are on that list, for sure not gluten specifically. Its not even on the pharmacists computer, they have no access to it, so even armed with a printout I wouldn't trust it, especially if I had celiac children. For myself Im knowingly taking a risk if I decide to take the meds, but no way would I take a chance with my kids.
They told me to call if I wanted to know (the manuf)
You can't bring meds back here either.