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
Hmmm ... I see Dr. Crimaldi also. He did the correct blood tests and wanted to do a biopsy, but I opted to put it off due to other pressing medical conditions. I find him very thorough, knowledgeable, supportive and caring. He explains everything - to the point of going over the allotted appt time - and even called me on a Saturday to give me the results of a (different) biopsy. He never ever said that celiacs was a disease of diarrhea; he in fact stressed that I would get a stomach ache if I ate the bagel I was craving. I don't know why we have such a different point of view on him. All I know is that I've done my research, came in with questions and scary concerns and he answered everything I asked him. I even asked other people about him (being thorough) and found that he came hightly recommended.
In addition, he sent me to a hematologist to confirm his suspicion of a potentially life threatening blood disease. Yes, I have it and I am now being monitored monthly. No other doctor, including the one that did surgery on me which caused me to bleed profusely, ever suggested that I had a problem.
I have a biopsy scheduled for September. I don't know about the EGD - it was mentioned. I haven't had any problem eating normally ... but I know that it might not be affecting my stomach at this point in time. I think my biggest mistake was taking my primary care's diagnosis and not calling the GI for the blood results (in May). Come to find out, she didn't even know what a tTg was ....
thanks for the advice. I'll let you all know what the results are.
I had actually been considering doing that before the GI doc told me it wasn't celiacs. It was definately something gluten-free doing it to me .... I was eating the english muffins and corn muffin (George's). Rest of the time it was meat, potatoes, etc. Normal stuff. Feel way better now .... either that or I'm trying to convince myself of it
I stand corrected - she gained when eating gluten. Thanks for pointing that out. I gained when I ate gluten-free .... and got bloated. Now that I'm eating normally the bloating is gone ..... leave it to me to be weird.
Have I missed something - why would gaining weight when eating gluten-free indicate anything? Other then the fact that I was hungry all the time, so I ate more.... and I ate worse. Potatoes to fill me up (fattening, I know) .... hate fruit, so candy ....
I was thinking IBS too, since I've always had a touch of constipation/diarrhea at different times in my life.
My tTg was 3 ... he said low, so no celiac. And yes, something is probably up. Maybe an intolerance. EmA - I'll have to look that up. I've had a battery of blood tests (9 vials at one time! - usually 3 or 4 is once every 3 weeks or so) so I'm sure I've been tested for everything.
I'm on gluten for the biopsy .... but I really don't eat that much of it normally. And having a problem with gluten and NOT having celiac disease is OK with me!
Isn't the Ttg the bottom line for diagnosis? (other then biopsy). And that was low, which is what he made his diagnosis on. And would the other numbers be high due to another autoimmune disease? Just curious.
Sigh. I dont know what to think/do now. This doctor was recommended as a celiac doctor.
I was told by my Primary Care (in May) that I had celiacs; this was from bloodwork the GI did and I assumed that they conferred (they are colleagues and she got me in to see him). I never called the GI for test results because of what the PC told me. I had follow up appt with GI on Monday and he informed me that I DO NOT have celiac disease. Like, hello. I've been gluten-free since May/June. He's doing a biopsy in September to confirm the diagnosis, so I am (happily for now) eating normally.
I do have ITP, an autoimmune disease, and NASH (liver). Have been tested for leukemia & lymphoma and came back negative.
You all know more about this than I do - what gives? Did the gluten-free diet make me feel any better? I was never really sick. I will say that something I was eating that was gluten-free (muffins, etc) was causing me to bloat and have a rash; it has gotten significantly better in the past 3 days of eating.
I see my PC tomorrow and will run this by her, but I am more then a little reluctant to take her word on anything right now.
I come from this from both sides. I was just diagnosed with celiac disease and can very VERY angry sometimes. I'm almost 50 and finally have money to go grocery shopping, buy what I want and not worry about the cost .... and now this? Who the hell thought this joke up? I call those times my "pity parties". Cause I'm definately feeling sorry for myself. And when I'm finally able to , I tap into how scared I was during all the testing, thinking it was cancer. And as someone said - it could be a whole lot worse. So have your angry party, you deserve it. But then try to move on ....
And yes, trying times do seem to bring out the worst in friends. If they' ve left you - they were NOT friends to begin with. Good riddance. I know it's difficult and i'm not demeaning college friendships, but a lot of them are based on all you being in the same dorm, class, etc.
I wish my daughter would be tested; she is a college student who has various medical problems. Ahem - she was fine until a bout of mono her senior year in high school. My guess is celiac disease, but she also has PCOS and a heart defect (just recently discovered) and is doctored out. Can't say I blame her.
Practical advice - you get a note from your doctor explaining your medical condition. You pull up articles about celiac disease - explaining the physical symptons, brain fog, etd - and go to the Dean of the College. And you ask for more time to finish the courses you had to miss. Most colleges are willing to work with students; they are not there to fail them. What they can do is change your failing grades to Incompletes and then you finish up the papers, etc, that fell by the wayside. At the very least it will be on record for the coming year. My daughter, sigh give me strength, refused to listen to me and has had her financial aid taken away. She went to the college yesterday and they are working with her on it - including changing a failing grade due to absences changed to an Incomplete, which will then be changed to a grade when she completes a paper.
Hope this helps. Hang in there. And I honestly do understand the anger and despair. I certainly still feel that way and the only reason why I haven't smashed all the glasses in the house is because I'd have to clean it up.
Please, let me know how you're doing. College is way too important to give up on.
And I thought I was the only one what wanted to rebel. I've got a major case of "why did this happen to me - screw it" .... and have been fighting off a major urge to eat what I want. It's been very difficult these past two weeks and I don't know if I'm over it just yet ... My biggest problem is that I didn't really get as sick as you all.
Sorry to hear the pizza wasn't worth it. I want a BLT on Wonder Bread .... it's the Wonder Bread that I crave.
I'm taking the plunge and will be buying some Kinnikinni (sp) online. I've read that their chocolate donuts are great - what about their bagels? My GI doc said to have some cream cheese on rice cakes - I would have laughed long and hard if I hadn't been on the table waiting for my colonoscopy. Rice cakes - you have GOT to be kidding Anyways, what about bread? I saw that there is two kinds of white rice bread by them and don't know which one to order.
OK - I have a (maybe stupid) question. I was diagnosed about 2 months ago -and didn't really have any symptons other then being tired. No stomach problems at all. Around the time that I had routine bloodwork (and it came back abnormal) I did have the bloating/cramping that people talk about .... and then the, um, physical response to that.
So - was there no damage done to my my intestine up until the time the celiac disease was kicked into activity? I know a lot of you have been sick for a while before diagnosis, but it was a matter of weeks for me, which is why I can accurately recall being well/being sick. And it ticks me off, cause if I knew WHY I was bloated the first time I would have stopped eating wheat thins and beer and then - would I have avoided the full blown celiac disease?
I have an appt with GI next week, first time I'll see him since the diagnosis. I've been dealing with my GP who isn't that knowledgeable, but is a GREAT diagnostician and has sent me to wonderful doctors, so no complaints here.
No endoscopy - I was just told that I had celiac because of blood work. Colonoscopy was because of my age (50 soon), family history and the new diagnosis. Too late for endo now; have been gluten-free for about 2 months. I doubt it would have come back abnormal ? ?? I only had physical symptons for a few days; I honestly think this whole thing was caught before anything really manifested. Routine bloodwork found it.
I had my colonoscopy a few weeks ago and I was a nervous wreck; it was a week of tests and had had a bone marrow biopsy two days before. But I was nervous about what they would find ... not the procedure.
The nurses were wonderful and I slept through it all. I, too, woke up in the recovery room and then slept most of the day away. Or at least I thought I did; my adult children now have wonderful stories to tell about their stoned mom. LOL. It seriously was the best sleep I've had in years.
The prep was OK .... and I guess I'm not normal in that regards. My doctor doesn't do the gallon drink, so I was spared that. I also didn't get up in the middle of the night like I heard so many other people did. I don't know why other then the celiac disease - and my limited diet - had already done most of the prep work ahead of time.
A small polyp the size of a dot was removed; it's benign and I have to go back in 5 years. No problemo!
Peter - you said they checked out the villi with the colonoscopy? I know my doctor went into my intestine, would this be the reason why? I have an appt with him in a few weeks ..... would this take the place of an endoscopy?