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 am *not* Celiac, apparantly, but I *do* have a B12 Deficiency - My doctors are not sure what is the cause of the defiency and I have had a normal MRI (of head), Colonoscopy, and Endoscopy...I'm in the process of trying to find out what the heck is going on with my body right now...(I do not have Pernicious Anaemia)
A low B12 level is when your body doesn't absorb B12 either through your intestines or bowel - The Ileum (part of the small intestine) is the part that is effected when you have Celiac, I believe (someone else may want to jump in and clarify this for me)...You may need to get B12 shots or maybe your levels will improve when you are further along on your gluten-free diet - Low B12 with Celiac means that your body is not absorbing certain vitamins/minerals (malabsorbtion) - Good luck to you and I hope you start to feel better soon
I get the B12 shots once a month now (I started out getting them every 2 weeks - I'm still at 1000mg but started out at 2000mg) and it took about 2 months of 1 shot per every 2 weeks before I started getting better - I still have the exhaustion and stomach symptoms but the tingling sensations in my feet and hands has improved (I still feel the pins and needles slightly on certain days, but overall things have improved) and my balance is also a bit better...
I think that recommended dose is dependant on low your B12 is - my level was 150 and the normal level starts at 243 or something (???)...My levels have gone up to 278 now, so I'm in the low normal range finally
I also have pain around my naval, but it's about an inch above the naval and to my right - if I press on the spot then I will be in severe pain for hours - it feels more like an obstruction in my case, but I don't know - I'm baffled by this - I cannot wear pants with a tight waist beause it triggers the pain.
Anyone know why pressure would cause pain in this area for me??? I'm okay as long as nothing touches or presses on it in a certain way...???
I have this, too - My heart will race after climbing 4 steps - I had a normal EKG and although my endoscopy was neg. for Celiac, I have so many of the symptoms - I have a B12 Deficiency so I was also very close to being anemic when I went to the doctor around Christmas time - They wanted to admit me into the hospital on Xmas Eve because my heart was racing so hard and fast - it also skips beats sometimes for no reason - My heart will sometimes race even when I do not do physical activities
Good luck to you - glad the gluten-free 'diet' helped you
Update: I just spoke with my gastroenterologist's secretary and she said that my endoscopy was negative
Now I don't know what to do - I have a follow up appt. scheduled for the end of May - should I ask for the enterolab test at that point?? I don't know what questions to ask my doctor at this point - I'm really depressed.
How many other people had negative endoscopy results??? Help - I need some advice
I was just wondering about Communion wafers the other day - I haven't been officially diagnosed as being Celiac yet, so I ate one yesterday and I didn't get sick - so maybe I'm not Celiac? But at the time, I was wondering if that would be the last time I could have the Eucharist - I guess I'll have to wait for the test results and go from there - but I was happy to see this post and happy to know I wouldn't be alone if I was no longer able to receive Communion
Wow! - Well it's great that you finally have a diagnosis, Karina! (I'm sorry that you have Celiac, but it's great to hear that you now know why you were so uncomfortable and miserable and can now change that and feel good & healthy!).
I have NOT received my results yet - my doctor called me on a Thursday afternoon last time - so I'm hopng that he'll call later today - I was wondering if I should call the office, but then I didn't want to talk to his secretary - I'd rather speak to him directly!
I'll post my results the minute I hear from him, though - I almost think it's going to be negative for Celiac based on the endoscopy biopsies alone - I think my stomach looked pretty normal to him...I may have to get that enterolab test?
I have NOT ever had a bone scan - Do they take the bone scans to check bone density? Like for degeneration? Hmmm...
I had spaghetti and bread last night and didn't get sick - If I had Celiac, wouldn't I be doubled over almost immediatley?? This morning I felt sick, but last night I was fine - I'm stumped
Keep me posted on how things are going for you - and also on the fate of your kids...Good luck!
Welcome, 'labs' - I know just what you mean about the 'barely functioning' comment
The bone aches and fatigue/weakness are probably the hardest things for me to deal with right now (I work 40 hours a week and some days are TOUGH) - I can tolerate the getting physically sick to my stomach part fairly well by now, but I haven't yet mastered the body aching and dragging feeling part
I have one pea sized hard little bump under my skin near my wrist (like the kind that I think you're speaking of) and I think they are calcium blobs or something??? My mother has a bunch of them - If you find out what they are, please post the answer - my mother told me that they are normal (she asked her doctor about her own little bumps) - I thought I had cancer when I first saw/felt mine
I think they're nothing to worry about, but I don't know what causes them - and I'm only relying on secondhand information, so go and ask your doctor just to be safe!
Well, that's what I thought - I thought I remembered having the test where I had to swallow the chalky stuff and I thought that that was called the upper GI - but then my co-worker told me that she had this total nightmare test and she called it the upper GI - Is there a lower GI? Maybe she got the two confused? or -Maybe she had it done a long time ago and the test is done differently now???
I was confused, too - I was hoping that someone may offer some clarity or recognize the correct name of the test that she was talking about...
She said she had 3 long tubes of liquid inserted into her whole intestinal tract - would that test be called the lower GI, by chance? She also said that they cannot put you out for that test or give you any drugs on account of blood pressure (???)
Hmmm...that's odd - my mother has the exact same problem with the splits and cracks in her fingers/hands - she does not have Celiac - she has been complaining of this for some time now...maybe it's not a Celiac thing??
What do you do for work? Do you use your hands a lot at work?
Has anyone here ever had an upper GI test? I have been hearing absolute horror stories about this test and do not want to have it done now...What were your experiences of this test and is it really THAT bad???
(I don't mean the endoscopy, but the one where they use tubes of liquid..)
Karina - You should definitely get a B12 blood test - I think that's the only way they will find it if you do have it (my doctor said that no one does the Schilling test for B12 anymore...has anyone been diagnosed with B12 by the Schilling test method?) - My neurologist caught my B12 Deficiency after my 'head' MRI came back completely normal.
I think my folate levels are also low...and something else, too...It's strange that we seem to have the same symptoms...I have not had a Celiac panel (not that I know of, anyway - my arm looks like a pin cushion from all of the various tests - it's possible that I have had the Celiac blood work done, but If I did, then I don't know what the results were yet).
Do you ever feel like your blood is carbonated? (I know that sounds weird, but that's the only way I can think of to describe what I feel) - I often feel like I just stepped off an all day ferry trip (like my body is still moving even when still) - I think that may be a B12 thing, but I'm not sure....but the chest palpitations are definetely B12-related!
When I have that pain above my naval, it hurts to breathe - there is nothing that takes that pain away until it runs its course! I used to vomit bile at the end of the episodes, but now I can avoid this by laying down the second I feel the pain start to come on...Do you yawn at all when you get the naval pain? That's one of the ways that I know it's about to hit me...I yawn like crazy and get dead tired all of a sudden...at that point I know that I have to lay down within a half hour to avoid serious agony.
Sometimes if I press on that naval area too hard I will cause the episode/pain to happen/appear - I'm wondering if that is a problem with the intestines? I don't think that it has anything to do with B12 Def...
I'm 31 and have that specific naval pain since the age of 16...How long has it been for you, Karina?
Also - you mentioned joint pain - the 2 most sensitive areas for me are my hips and the middle part (not the knees or ankles!) of my lower legs (front shin area)...these feel extremely achey - like they are rusting from the inside out. Where is your bone/joint pain?