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Your Story-and Input

k2626

By k2626
in Coping with Celiac Disease

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k2626 Explorer
k2626
Posted

Whoops put this in the wrong forum at first

I would love to hear everyones story on what led them to a dx. I am sure it will help future people too.

I also have NOT bee dx'd and am wondering if this sounds like Celiac. Note- I did get a panel prior to my pancreas issues but it was negative--are the labs usually right/wrong?

2004 started to get side stitch type pains in mid left stomach--so bad I could not walk, would not last more than 15 min

2006 developed GERD-(bad chest pains, some stomach burning) this was ongoing for 2 yrs and I was on aciphex every day if I missed a day it would hit

***2008 all w/in the same month I started to get burning nerve type of pains in random joints that would pop around from place to place lasting a minute to pulsating for over an hr--usually hiting one of the following-ankles, random toes/fingers. Began getting a vibrating feeling in either leg, as if a cell phone were on it on vibrate, developed horizontal ridges and bumps all over finger and toe nails, muscle twitching all over my body..hundreds per day, extreme joint cracking all over, loose joints (during this time period I was eating a lot of cliff bars and whey protein)

******2009 started to get upper left sided pain and middle burning-found out my pancreas is inflammed per my labs but my scans (ct, mri, mrcp and EUS) show no inflammation, cysts etc (thank god as my dad died of pancreatic cancer). I will be having another EUS soon. Drs are puzzled as to what is going on.

My nerve pains, twitching, cracking have reduced by 40% I still have the nail issues and the pancreas pains

Does this sound like it could be celiac? I have had endless tests-MRI (of head and spine-thought maybe MS at first), EMG (no nerve damage), hundreds of labs, then all the scans for the pancreas.

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The Fluffy Assassin Enthusiast
The Fluffy Assassin
Posted
Whoops put this in the wrong forum at first

I would love to hear everyones story on what led them to a dx. I am sure it will help future people too.

I also have NOT bee dx'd and am wondering if this sounds like Celiac. Note- I did get a panel prior to my pancreas issues but it was negative--are the labs usually right/wrong?

2004 started to get side stitch type pains in mid left stomach--so bad I could not walk, would not last more than 15 min

2006 developed GERD-(bad chest pains, some stomach burning) this was ongoing for 2 yrs and I was on aciphex every day if I missed a day it would hit

***2008 all w/in the same month I started to get burning nerve type of pains in random joints that would pop around from place to place lasting a minute to pulsating for over an hr--usually hiting one of the following-ankles, random toes/fingers. Began getting a vibrating feeling in either leg, as if a cell phone were on it on vibrate, developed horizontal ridges and bumps all over finger and toe nails, muscle twitching all over my body..hundreds per day, extreme joint cracking all over, loose joints (during this time period I was eating a lot of cliff bars and whey protein)

******2009 started to get upper left sided pain and middle burning-found out my pancreas is inflammed per my labs but my scans (ct, mri, mrcp and EUS) show no inflammation, cysts etc (thank god as my dad died of pancreatic cancer). I will be having another EUS soon. Drs are puzzled as to what is going on.

My nerve pains, twitching, cracking have reduced by 40% I still have the nail issues and the pancreas pains

Does this sound like it could be celiac? I have had endless tests-MRI (of head and spine-thought maybe MS at first), EMG (no nerve damage), hundreds of labs, then all the scans for the pancreas.

My story is in my sig line. Not to go all vaudeville doctor again, but if your worst symptoms came when you were eating a lot of whey protein, you might want to ... stop eating whey protein. In fact, quitting all dairy might be advisable. It's difficult, but not as hard as it first seems. (Be sure to get a Calcium-Magnesium supplement, though.)

The burning pains in random joints sounds like a description of ankylosing spondylitis that I saw on this board. Unfortunately, I couldn't find that thread, but here's one from 2007: https://www.celiac.com/gluten-free/index.php?showtopic=35789

Good luck to you and I hope you find an answer soon.

Edit: This was the thread I was thinking of: https://www.celiac.com/gluten-free/index.php?showtopic=60569 If you're male, get tested for gout: Open Original Shared Link

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