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      Frequently Asked Questions About Celiac Disease   09/30/2015

      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 Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can 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-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is 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 Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

B12 Deficiency
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21 posts in this topic

Hello all,

I'm brand new here and I have a few questions...

I just went for an endoscopy yesterday and am awaiting the biopsy results - my doctor said that my stomach 'looked' normal but he suspects Celiac based on my symptoms...I have already had a colonoscopy, and although my colon was twisted in two places, everything else looked/was normal.

My questions to you all are:

1. Do you have hearbeat problems when drinking ALL types of alcohol (I do not drink beer or wine coolers because they have always bothered me - I know that beer is a no-no for Celiacs) - I used to be able to have 2 mixed drinks if I went out for dinner with my friends - now I can only have 1 drink (if that) and I have rapid and very 'hard' (and skipped) heartbeats afterwards.

Also - Does coffee bother any of you? I'm not sure if this is an allergy or a Celiac symptom - my heart also races with coffee/cream/sugar.

2. Do any of you have a B12 Deficiency or have had associated Anemia? I was diagnosed with B12 Deficiency (I'm 31) in December and my doctors cannot find what is causing the deficiency...They are thinking possible Celiac...Have any of you had a similar experience/link between the two??

3. Do any of you have pain on the right side of your navel (diagonally about 1 inch from your right on the top)? I have had episodes of extreme pain there - If I press on that area while digesting, I will be keeling over in agony for hours (it hurts to breathe)...I have to buy pants with a large waist...

4. I have GAINED weight over the past few months - I noticed that losing weight was a common Celiac symptom, but have any of you gained weight with this disease??

I think I have many other common Celiac symptoms - the bloatedness, extreme fatique that hits me out of nowhere, bad vision (although they say this is not a symptom), muscle and joint aches/spasms (related?), dizzyness, bad memory, and so many more!!!

- I would really appreciate any help that you are all willing to give me - I have days where I am able to function and days where it is so hard to get out of bed...Thanks ahead of time!

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Should I try a gluten-free diet before a definite diagnosis? If the endosopy biopsy comes back neg. then what is the next step? Blood work?

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Hi Meenucat,

I put on weight with celiac disease, my vision suffered on and off with celiac disease, alcohol gave me heartburn, I had anemia, gut pains, etc., etc., etc.... Basically with celiac disease your body feels like it is falling apart. :(

If you had something like amebic dysentery, or a tape worm, you might lose some weight. Been to India lately? <_<

I personally would say eliminate gluten from your life. When it comes to doctors I say, "Why feed their greed, and starve your health?" All they

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I have a B12 Deficiency and my doctor thinks that I may also have Celiac Disease - Has anyone else here ever had the B12 Defiency?

I have had a colonoscopy and just had an endoscopy yesterday and they have ruled out just about every other cause of the B12 Def...

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Thank you for your reply :)

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I had a B12 deficiency and it was through that that I discovered the link with possible celiac disease and was tested for it. B12 can be due to pernicious anemia (lack of intrinsic factor), pancreatic insufficiecy, dietary restrictions (relevant especially for vegetarians), intestinal resection, or malabsorption (particularly Celiac Disease).

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Thank you for the information, Yankee - They have already ruled out Pernicious Anemia and I am not a vegan/vegetarian...I have had a CBC, Chem Panel, Lime Disease, and Sed. Rate tests and am 'normal' in all - the B12 Deficiency was discovered by my neurologist - They only found it because the tingling was so bad in my feet/hands and because my balance was so far off...

I have never had stomach surgery (or any kind of major surgery) and I think that the pancreatic disorder would have showed up in the blood work - so my gastroenterologist is stumped with me - He's guessing that it could be Celiac...

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Hi there,

The progression in my case, was anemia, which I have had ever since I can remember. I finally found a doctor that said that something was wrong. Bloodwork, fecal occult testing, endoscopyand colonoscopy, with mutiple biopsies, celiac diagnosis. THEN, ALL the bloodwork was examined and B12 deficiency was discovered and I'm now taking shots for that. (What a DIFFERENCE they have made :P ) I'm still taking iron, too, there was talk at one time of IV Iron transfusion, but my levels had come up, so the Doctor decided to continue with the Oral treatment. B12 doesn't seem to be rising, although I feel a lot better.

Hope that makes sense.

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I too have the right sided pain, gained weight, rapid heartbeat if I drink any "allowed" alcohol...and nauseousness, hair loss, itchiness, mood swings, joint pain, dizziness, adsentmindedness, jheadaches, etc., etc. the list goes on and on.

just scheduled for a gastrointestinal endoscopy in about 6 weeks. i was confirmed, diagnosed at 2 with celiac. now severe problems. anything i eat or drink causes me pain.

so i'm right there with you with these symptoms and problems. I wish i had the problem of losing weight. Nothing i do - i can't gain or lose. I gained about 12 lbs in a matter or a week and a half. now - my entire body feels as if it is shutting down.

the positive thing is that i have a wonderful doc - who specializes in Celiac - or the closest to a specialty. researched and studied it his entire career. probably 25 yrs.

good luck.

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For anyone considering supplementing vitamin B-12 orally, I have read that methylcobalamin is a better choice than the ubiquitous cyanocobalamin because it is in an already assimilable form. Cyanocobalamin, on the other hand, requires sufficient intrinsic factor to convert it into its active form, and many people have low levels of this substance.

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Thank you all so much for the help & for the posts!!

Sharon - Do you remember what your very first low B12 level was? (before you received any of your shots).

Did your doctors find any abnormalties with your biopsies or only in your bloodwork?

My B12 shots have not really helped me - they stopped the tingling/pins and needles sensation in my hands/feet, but that seems to be all that the shots 'did' (I get 1000mg bi-weekly right now and my levels are slightly elevated and in the low-normal range now).

Thanks :)

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Meenucat,

You have caused me to wonder about B-12 deficiency in myself. I remember wondering this before and I guess with other s\tuff going on I forgot about it. I used to get really bad tingling in legs and feet every day. Doc thought poss. MS so did a CT of the brain and a nerve conduction test. Everything was normal. I don't believe they have ever checked me for B12. I do have low iron, I don't remember what it was but it was not normal, and the doc said I could treat it if I wanted to. I don't drink, but I do get palpitations from time to time, and I have been having chest pain (doc thinks its muscular). I have the EXACT pain you were talking about above the naval, and I have experienced it on the left side as well. If I feel it and then touch it, it is VERY tender. I don't have it every day, it seems like I go through spurts with it a few days at a time and then a couple of good days...I also do have bone and joint pain, and achiness. I am only 30, so this isn't really acceptable to me, you know?

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wHOOPS! I sent it without finishing. Anyway, I was also going to add that I am waiting to hear the results of my endoscopy as well. I had it about a week and a half ago. Did you have blood work too? I mean a celiac panel?

Karina

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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?

Sorry this post is so long... :(

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Meenucat,

I guess I will ask about a b12 test the next time I see the doc. My abdominal pain started about seven mos ago, and it does not cause me to vomit. I can function pretty ok with it, it just hurts. I have had a few times where it hurt really badly without me even touching it, and I can not feel it and then touch where it is and it will start sometimes. My doc didn't know what to make of it. He said it could be celiac disease related but he doesn't know for sure and anyway I am still waiting on the results of my endoscopy, so I have not yet been diagnosed with celiac disease. I had a celiac panel done and it came back suggestive of celiac disease, but in and of itself not diagnostic, so the doc said we needed to do endo. I have noticed that the symtpoms got worse when I started back on birth control, and I think that for me hormones play a part in what is going on. My GI doc said it is possible that they are aggravating an underlying condition like celiac disease. Lately, the symptoms have been a bit better, so maybe my body is getting used to this birth control. You may not have these issues, I don't even know if you are a woman! LOL :lol:

My joint and bone pain are mostly in my right hip and in my ankles. I have had it elsewhere as well like around my elbows. And about my naval pain, I don't recall it ever hurting to breathe.

Karina

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Hi all, I am new to this board, not yet diagnosed with celiac but the troops are leaning in that direction. have experienced many of the same symptoms and it really is tough, especially the unexplained weight gain and the incredible fatigue. Have just been diagnosed with pernicious anemia off the chart numbers and epstein-barr. Being tested for lupus but I doubt that very much, have more celiac symptoms than lupus symptoms. Nice to know this board exists. I will have many questions I am sure, just hope the diagnosis part doesn't take too long as I can barely function and just want my life back.

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Welcome, 'labs' - I know just what you mean about the 'barely functioning' comment :blink:

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 :lol:

Good luck with your health and happy posting!

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Meenucat,

I got my endoscopy results back, and they are positive for celiac disease. The doc is sending me stuff in the mail and then I am supposed to see him May 5 to discuss everything. Have you gotten your endoscopy results back? I have been wondering about your results since are symptoms were so similar. My abdominal pain is back. It seems I had a short two week reprieve from it. I havn't gone gluten free yet--I am preparing to...my daughters birthday is in less than two weeks, I want regular cake one last time! :D Last night I had stouffers lasangna, and pretty much immediately afterwards I was really bloated and in pain--it was the first time I ever linked the pain to eating. I usually just have it all the time on and off. Anyway, now I guess I need to talk to our pediatrician about getting the kids tested. Also, I guess I need to get some bloodwork done to see what all deficiencies I might have at this point, and a bone scan--I have heard this is a good idea. Where are you in this process? Have you had a bone scan? It's wierd, because I have all these symptoms of celiac disease, and now a diagnosis of celiac disease, but it is still hard to accept in a way that celiac disease could have been causing so many problems for so long and no body knew....I guess that is normal, huh? ;)

Karina

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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 :unsure:

Keep me posted on how things are going for you - and also on the fate of your kids...Good luck!

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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 :(

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Meenucat,

I am sorry you didn't find answers yet. I would ask you GI for a report of the endoscopy. Does it just say "negative" or what? I know that several here have had negative endoscopies, but have gone on the diet, and bam! Felt better. Maybe you should try the diet for a few months and see. I know it is a big commitment, and all, but it may be worth it. I have also wondered maybe you should try to get the gene test. I know it is expensive, but if you don't have the gene for celiac, then you for SURE know you don't have it. I am thinking I may want to do this for my kids, because it there labs are normal, before putting them through and endoscopy I want to know is it even possible for them to have it? If they don't have the gene for it than that will be one last thing I won't have to worry about for them in their life-time. If they have the gene then I probably would have to do an endoscopy. Anyway, having a diagnosis is not the end all with this thing. For me, it has really opened up a can of worms. Now I have to get a bone scan, other tests for deficiencies, and even then--the doc warned me that celiac disease may not explain ALL my symptoms--so that is really comforting, eh?

Keep searching for answers, and follow your instincts. I wish I would have followed mine earlier, I would have searched more aggressively for the answer to my own health issues.....Ah, hindsite is 20/20.

Karina

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