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pondy

Upper Gi/ribcage Pain

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Thanks for your thoughts!

I am supplementing with B12 and D3 - that's it. My doctor did not check my B12 & Folate levels until I was already supplementing for about a month. So, I'm not sure if I was low in that department - probably though.

Is it safe to assume that if it is nerve damage from many years of malabsorbtion, it will resolve itself if I keep supplementing & living gluten free? I'd imagine so, but... ?

If it is nerve damage from malabsorbtion, it will resolve itself with supplementation as long as the damage isn't too extensive.

Ravenwoodglass mentions the numbness / tingling in the extremeties that comes with low B12. This is true and typical, however, I can tell you from personal experience that the nerve damage caused by malabsorbtion is not limited to the hands and feet. I had low B12 which caused nerve damage that extended from my lower back and wrapped around to my lower right rib cage. After supplementing with B12, the pain lessened significantly. I still have some very mild (not noticeable unless I press on the right area) pain in the same location almost two years later. However, please note that I let my pain go on for way too long (3 years +).

To add to the point that nerve damage is not limited to the extremeties, I also have residual nerve damage in the neck at the base of my skull.

Best of luck.

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I have nerve damage BODY wide. :blink:

My scalp, back, neck, trunk, backs of my legs, backs of my arms, FACE ---BURN. My hands and feet burning and tingling and numbness resolved FIRST, but I still have a lot of stuff going on.

My GI doc says he has never seen anyone with celiac manifest with symptoms as I have. He consulted two other GI docs and 2 neuros (I had already seen 3 myself :rolleyes: ) They all say it may not totally resolve, but I choose to think positively. My GI agrees with me---anything is possible and there is much they do not know about this thing. We're all walking lab rats in a way--and the medical world has much to learn from US.

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If it is nerve damage from malabsorbtion, it will resolve itself with supplementation as long as the damage isn't too extensive.

Ravenwoodglass mentions the numbness / tingling in the extremeties that comes with low B12. This is true and typical, however, I can tell you from personal experience that the nerve damage caused by malabsorbtion is not limited to the hands and feet.

Teach me to post in a hurry :lol: , your quite right it is not limited to just extremeties. I also had a lot of other areas that were impacted by nerve damage including having difficulty swallowing. I did have the pins and needles in the extremeities first but not everyone would.

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If they would only listen.......

Someday, soon they will. My new GI (not too far out of med school--maybe in his early 30's) represents a new crop of docs who are more celiac-savvy than the old school minds. Also, as more and more of us become vocal about it, and more people are DXed, all the old school thinking will change. The next generation will not suffer for their whole lives as so many of us did.

Fingers crossed, anyway. <_<

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Having an allergy to something is not the same as an intolerance. An intolerance to dairy would not show up on a scratch test the same as gluten intolerance won't. Deleting dairy hopefully will help with the pain. It is good that you have a new doctor and if things don't improve hopefully he will have some ideas.

It can be hard to find a soy and casien free butter replacement. I used Ghee for a while which is clarified butter but found out that real butter is also usually tolerated and I had no problems with it. If you go with a nondairy milk don't use Rice Dream, it may say gluten free but is processed with barley and many of us do react to it.

Thanks so much for the info!! I gotta say, I feel pretty stupid. :( It seriously never dawned on me to check out the difference between an allergy & an intolerance to dairy...

Well, I picked up some Silk Pure Coconut 'milk' & handed the cow products off to my housemate. Here's hoping in a few weeks or so the pain lightens up - that, or my new doctor is one of those more enlightened ones that Irish spoke about!

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.

Ravenwoodglass mentions the numbness / tingling in the extremeties that comes with low B12. This is true and typical, however, I can tell you from personal experience that the nerve damage caused by malabsorbtion is not limited to the hands and feet. I had low B12 which caused nerve damage that extended from my lower back and wrapped around to my lower right rib cage. After supplementing with B12, the pain lessened significantly. I still have some very mild (not noticeable unless I press on the right area) pain in the same location almost two years later. However, please note that I let my pain go on for way too long (3 years +).

To add to the point that nerve damage is not limited to the extremeties, I also have residual nerve damage in the neck at the base of my skull.

Best of luck.

You know, I do have periodic tingling in my extremities - but only on my left side. Not just tingling either - but severe pain that feels like it's deep down in the bones of my forearms, wrists, hips, knees! :( Couple times it woke me up from sound sleeps!

I've been seeing a 'Neuro-Chiropractor' for this. It usually helps.

My Chiro told me that I do have some nerve damage, and that it could very likely be due to years of malabsorbtion.

Funny that you mention the base of your skull - I've had it hurt in that general area also. It's like even the pillow & my hair hurt when I'm laying down. Weird stuff...

Probably all these pains of mine are a combination of lots of things going on. My body has been deprived of all the essentials - what do I expect?

On the upside, I'm hopeful about feeling better with time, supplementation, and now going dairy free. :rolleyes:

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Someday, soon they will. My new GI (not too far out of med school--maybe in his early 30's) represents a new crop of docs who are more celiac-savvy than the old school minds. Also, as more and more of us become vocal about it, and more people are DXed, all the old school thinking will change. The next generation will not suffer for their whole lives as so many of us did.

Fingers crossed, anyway. <_<

Here Here!!!

Fingers and toes crossed!!! :rolleyes:

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but severe pain that feels like it's deep down in the bones of my forearms, wrists, hips, knees! :( Couple times it woke me up from sound sleeps!

Funny that you mention the base of your skull - I've had it hurt in that general area also. It's like even the pillow & my hair hurt when I'm laying down. Weird stuff...

Oh Pondy, I have this same thing!!!!!!! DEEP bone pain all over and my face hurts just to lay my cheek on my pillow. My scalp and neck too...Horrible stuff! I recall you and I discussed this when you first came on the site. I had so hoped you had gotten some relief from this. This burning is insane, isn't it!

We'll just keep hanging in there, hon. I will too. And yes, give the no dairy thing a try. Let me know how you do!!!

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IrishHeart, It makes me really sad to hear that you know that pain also - I mean, I'm glad I'm not alone - but yes, it is truly awful.

You have a wonderfully optimistic attitude despite all you are going through - that's a gift & it is so refreshing!

Thank you for all of your support! I will hang in there as best I can & think healing thoughts for you!

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IrishHeart, It makes me really sad to hear that you know that pain also - I mean, I'm glad I'm not alone - but yes, it is truly awful.

You have a wonderfully optimistic attitude despite all you are going through - that's a gift & it is so refreshing!

Thank you for all of your support! I will hang in there as best I can & think healing thoughts for you!

Right back at you!! Please let me know how you are doing and what the new doc tells you. Best wishes.

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Please, I'm in need of some advice...

I am dealing with constant pain underneath/behind my ribcage.

It simply will not go away - even though I am careful in regards to diet and personal hygiene items.

The pain is typically localized to my right side. It is present 90 per cent of the time. It is best described as dull & achy. It's like a really bad toothache in my upper gut.

This is why my initial endoscopy was done (back in February). Biopsy revealed total villus

atrophy & I've been gluten free ever since.

My doctor said oh well, can't do anything about it. This makes me sad - I fear I'm not healing at all - and yet... blood tests show high B12 (1481), real high Folate, and normal D levels. As of June or so, my 'thyroid function' was within normal limits... just don't know why I still have this chronic pain in my side. I'm frustrated.

I will be getting a second opinion next month. Any ideas as to what sorts of tests - if any - I could ask for? Any ideas at all?

Thanks for reading, and for any & all input!

P.S.: I've posted about this in the past so I apologize for being repeating myself -

guess I'm just desperate for some more enlightenment. Can't get anywhere with my GI or regular doctor...

Thanks again,

Pondy

When I got diagnosed that was my main complaint. I didn't have any GI issues, it was a constant pain under my left ribcage. It did get better once I went gluten free, but it does come back when I get glutened. I do have heart palpations and chest pain on a regular basis, but I have POTS (postural ortostatic cardio syndrome)and it does get worse with glutening. Your pain should go away with time, but I've been gluten free for almost a year now and my ribcage pain disappeared after about 3 months. Maybe you are still getting gluten and don't realize it. I was getting glutened by my toothpaste and mouthwash and didn't realize it. You might want to look into your personal hygiene products to find out if you are being accidently glutened still. I hope it gets better for you....I know the pain you are dealing with. It used to wake me up in the middle of the night because it would be so bad. Good luck!

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Thanks for the support Macbre,

I just had to leave an outing with friends because of the pain. I'm laying here with a bag of frozen corn on my left ribcage. This feels just like old times - 10 months ago when it suddenly manifested. This is like "take your breath away" hurting.

I don't know what to do except try to just ride it out, so that's the plan for tonight... try to stay calm and wait... Tomorrow will hopefully be less intense.

I've been wanting to read up on POTS - I've seen posts here about it. Might be something else I could mention to my doctor.

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Thanks for the support Macbre,

I just had to leave an outing with friends because of the pain. I'm laying here with a bag of frozen corn on my left ribcage. This feels just like old times - 10 months ago when it suddenly manifested. This is like "take your breath away" hurting.

I don't know what to do except try to just ride it out, so that's the plan for tonight... try to stay calm and wait... Tomorrow will hopefully be less intense.

I've been wanting to read up on POTS - I've seen posts here about it. Might be something else I could mention to my doctor.

Hon--- are you SURE you are not getting CCed somehow???

Also, has this area been X-rayed???

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Irish,

I don't know if I am getting cc'd - it's possible as I share a kitchen with a gluten eater, but we are both careful.

All I know is that I'm worse than yesterday - can't hardly move - can't get comfortable. I just feel ALL inflamed.

On a positive note, the really intense pain is intermittent. The constant pain is more livable - I'm used to it.

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Irish,

I don't know if I am getting cc'd - it's possible as I share a kitchen with a gluten eater, but we are both careful.

All I know is that I'm worse than yesterday - can't hardly move - can't get comfortable. I just feel ALL inflamed.

On a positive note, the really intense pain is intermittent. The constant pain is more livable - I'm used to it.

Gosh, you sound like me a few months ago. :( So sorry hon. And yes, we do get "used to it" (some ask me how the F*** I stand the pain I live in. I do not know--- as it is not fun at all.) I remain hopeful it will resolve.

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I'm having the same pains, too. My new gastroenterologist told me that he believes it is from an ongoing small amount of gluten getting into my diet. I never had it before I was diagnosed. I'd been gluten-free for almost a year when it happened, with only a couple of accidental gluten exposures. It's only been in the last month. It got so bad that I went to the hospital. This prompted another endoscopy that showed healed villi but definite signs of irritation (?). He said he thinks I am one of those that are very sensitive and that I need to wait it out for the next two months without having any accidental glutening!

The pain is a combination of sharp (every time I eat) and dull/achey all of the time. It is under my left ribcage and can extend slightly below at times. It is horrible, so I completely understand! If you find anything else, please let us know!

Good luck!

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Please, I'm in need of some advice...

I am dealing with constant pain underneath/behind my ribcage.

It simply will not go away - even though I am careful in regards to diet and personal hygiene items.

The pain is typically localized to my right side. It is present 90 per cent of the time. It is best described as dull & achy. It's like a really bad toothache in my upper gut.

This is why my initial endoscopy was done (back in February). Biopsy revealed total villus

atrophy & I've been gluten free ever since.

My doctor said oh well, can't do anything about it. This makes me sad - I fear I'm not healing at all - and yet... blood tests show high B12 (1481), real high Folate, and normal D levels. As of June or so, my 'thyroid function' was within normal limits... just don't know why I still have this chronic pain in my side. I'm frustrated.

I will be getting a second opinion next month. Any ideas as to what sorts of tests - if any - I could ask for? Any ideas at all?

Thanks for reading, and for any & all input!

P.S.: I've posted about this in the past so I apologize for being repeating myself -

guess I'm just desperate for some more enlightenment. Can't get anywhere with my GI or regular doctor...

Thanks again,

Pondy

I have a has a feeling in my left side for a while, about five years now. I am now getting pains there, where before I would have described as you have and ache feeling.

I have not been diagnosed in regards to gluten but I am believing more and more that this could be the cause of SO many symptoms I've had over the past 5 years.

Please post if you learn anything that could cause this feeling. Mine is on my left side just at or behind the bottom rib.

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Quick little update here...

- after a couple days completely dairy free my pain lightened up (thanks to advice from wise & caring people here :)

- tried Lactaid milk yesterday & now have my old pain back. Note to self: lactose free isn't good enough ;)

- seeing my GI next week due to bowel change (flat ribbon thin bm since early November).

GI thinks the upper left pain is a pulled muscle or some such thing - maybe he thinks it's in my head. Whatever... I'm taking him OFF of my payroll ;)

- going for a 2nd opinion next week, so hopefully I can post something helpful after that...

I have been working really hard to get into a positive frame of mind - hoping that my body follows along!

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Quick little update here...

- after a couple days completely dairy free my pain lightened up (thanks to advice from wise & caring people here :)

- tried Lactaid milk yesterday & now have my old pain back. Note to self: lactose free isn't good enough ;)

- seeing my GI next week due to bowel change (flat ribbon thin bm since early November).

GI thinks the upper left pain is a pulled muscle or some such thing - maybe he thinks it's in my head. Whatever... I'm taking him OFF of my payroll ;)

- going for a 2nd opinion next week, so hopefully I can post something helpful after that...

I have been working really hard to get into a positive frame of mind - hoping that my body follows along!

I sound like a broken record, I know, but Pondy, I am still thinking dairy

and possible CC. Having your pain lighten up is a clue.

The BM issue? take probiotics. Drink water and NO DAIRY, not even lactose free. (sorry hunny) Hang in there.

You know how we both have burny and sensitive skin and hurt all over? Read this article:

http://www.nytimes.com/2011/11/13/magazine/diagnosis-hurt-all-over.html?pagewanted=1&ref=magazine

My hubs read it and said..babe, this sounds like you. <_<

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IrishHeart,

Yes, this article brought back memories....

But I have to tell you that parts of it made me wince. For one thing, the "expert" cited in the article considered celiac a rare disease. Second, he stated that false-positives are common with celiac disease (and, in this case, the patient tested positive THREE times!). :blink:

So, the "expert" was very proud of his diagnosis...a diagnosis that the first, second, third, etc., doctors should have recognized immediately. You and I could have made this diagnosis after a two-minute consultation with the patient. We should hang out a shingle! :D

...and thanks for the help with the Emoticons!

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Interesting article, Irish. Does sound familiar! ;)

I'm back on coconut milk for everything, so we'll see how it all shakes out. I agree with you about possible cc & dairy. Now that dairy is out, I'm on to the cc investigation.

I suspect a link between the upper GI pain and constipation - which I read somewhere that dairy products can cause. I plan to discuss it with the new doctor.

Question for you - any particular brand/type of probiotic you would recommend?

Thanks for all your help!

:)

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IrishHeart,

Yes, this article brought back memories....

But I have to tell you that parts of it made me wince. For one thing, the "expert" cited in the article considered celiac a rare disease. Second, he stated that false-positives are common with celiac disease (and, in this case, the patient tested positive THREE times!). :blink:

So, the "expert" was very proud of his diagnosis...a diagnosis that the first, second, third, etc., doctors should have recognized immediately. You and I could have made this diagnosis after a two-minute consultation with the patient. We should hang out a shingle! :D

...and thanks for the help with the Emoticons!

You're welcome. ;)

We could have DXed her by just LOOKING at her (my Native American name is "She Who Sees Celiacs Everywhere") :lol: And yes, my friend....those were my very same objections to the article as well. Raised my objections on the thread where admin also posted the article-- and I had a good rant there as well. :rolleyes:

The implication was the doctor was "just amazing"....and the patient complied and got well because of him. HA! The article, BTW, was written by a......doctor. :P

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Interesting article, Irish. Does sound familiar! ;)

I'm back on coconut milk for everything, so we'll see how it all shakes out. I agree with you about possible cc & dairy. Now that dairy is out, I'm on to the cc investigation.

I suspect a link between the upper GI pain and constipation - which I read somewhere that dairy products can cause. I plan to discuss it with the new doctor.

Question for you - any particular brand/type of probiotic you would recommend?

Thanks for all your help!

:)

CULTURELLE

I have tried several, and they worked okay for me, but after talking with my new, cool GI guy, he said this one is backed by studies at Tufts Univ. It did the trick --for me and for several others I suggested it to--for D and C! And yes, dairy (specifically, my beloved cheese) most definitely caused C, bloating and pain in me, not D.

Drink a LOT of water throughout the day. Start your day with 16 oz. of good old water. It will help move the bowels. I promise. Everyone thinks we need more fiber, more fiber...no, we need more water!!!

Good Lawd, I know waaaaay too much about poo..... :blink:

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