Posted 06 April 2004 - 01:10 PM
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!
Posted 06 April 2004 - 01:54 PM
Posted 06 April 2004 - 02:19 PM
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’re going to tell you are things that keep you coming back to spend money.
Just pretend you are Japanese and eat rice, meat, and vegetables. It's a lot cheaper than any doctor.
Posted 06 April 2004 - 03:32 PM
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...
Posted 07 April 2004 - 07:25 AM
Posted 07 April 2004 - 08:46 AM
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...
Posted 07 April 2004 - 09:29 AM
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 ) 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.
Posted 07 April 2004 - 10:44 AM
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.
Posted 08 April 2004 - 08:36 AM
gluten-free since November 1, 2003
Posted 08 April 2004 - 08:46 AM
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).
Posted 08 April 2004 - 12:02 PM
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?
Posted 08 April 2004 - 12:04 PM
Posted 08 April 2004 - 02:01 PM
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...
Posted 09 April 2004 - 10:53 AM
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
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.
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