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I Dont Know Where To Turn, Or What Is Wrong

k2626

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k2626 Explorer
k2626
Posted

Hi all I am back...as a reminder around Feb 06 I started having chest pains..had the standard heart tests, my dr decided it was GERD. I was on meds for almost 2 yrs--if I missed even a day it would come back. I had an upper scope no biopsy it was fine. Last summer I started to have muscle twitching all over, random nerve pains, extreme joint cracking, dents and horizontal ridges in all my nails, buzzing feelings in my legs and random numbness in my hands. I thought it was rapid onset of MS or something as it all seemed to hit within a few wks--well, had an MRI and etc etc...all good

My dad died on pancreatic cancer a yr ago. After he was dxd my dr tested my ca 19 --just to see, well it was slightly elevated at 42 but he said it was no big deal so I ignored it. Well I started to have an upper left sided pain in Feb. Got tested for my lipase and it was elevated slightly meaning inlammed pancreas. I had another ca 19 which was up from the prior month by 20 pts. I figured I must have cancer too. Well I had a CT scan-clear, ab ultra sound-clear, an EUS (endoscope of pancreas)-clear, an MRI of pancreas and MRCP of surrounding area 2 months back-clear.

My pains are starting to come back and someone mentioned-celiac..and that celiac can cause the lipase to elevate and can hurt the pancreas. Does anyone know anything about this? I also have heard celiac can cause nerve pains, twitching etc etc...I just have to think all of those symptoms are related to my pancreas or visa versa.

Note- I did have a lab test for celiac a long time ago when my nerve pains started- are the blood tests accurate?

Thanks so muhc

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runningcrazy Contributor
runningcrazy
Posted

Hi,

Im really sorry I cant address your other questions, besides the one about the blood tests.

No, they are not reliable. I had 3 negative tests, and I still went off gluten and my headaches, stomach aches, and spitting up food is gone. My pediatrician and GI both told me there was no way its celiac, im probably just born with the tendency to be constipated and in pain. What???

We ordered enterolab, my results will be here in the next few days. From what I've read on the board, enterolab is SO much more sensitive and reliable. It takes lots of damage to show on a blood test, but enterolab can detect it even before its that far. Have you considered enterolab?

Hope you are feeling better.

sylviaann Apprentice
sylviaann
Posted
Hi all I am back...as a reminder around Feb 06 I started having chest pains..had the standard heart tests, my dr decided it was GERD. I was on meds for almost 2 yrs--if I missed even a day it would come back. I had an upper scope no biopsy it was fine. Last summer I started to have muscle twitching all over, random nerve pains, extreme joint cracking, dents and horizontal ridges in all my nails, buzzing feelings in my legs and random numbness in my hands. I thought it was rapid onset of MS or something as it all seemed to hit within a few wks--well, had an MRI and etc etc...all good

My dad died on pancreatic cancer a yr ago. After he was dxd my dr tested my ca 19 --just to see, well it was slightly elevated at 42 but he said it was no big deal so I ignored it. Well I started to have an upper left sided pain in Feb. Got tested for my lipase and it was elevated slightly meaning inlammed pancreas. I had another ca 19 which was up from the prior month by 20 pts. I figured I must have cancer too. Well I had a CT scan-clear, ab ultra sound-clear, an EUS (endoscope of pancreas)-clear, an MRI of pancreas and MRCP of surrounding area 2 months back-clear.

My pains are starting to come back and someone mentioned-celiac..and that celiac can cause the lipase to elevate and can hurt the pancreas. Does anyone know anything about this? I also have heard celiac can cause nerve pains, twitching etc etc...I just have to think all of those symptoms are related to my pancreas or visa versa.

Note- I did have a lab test for celiac a long time ago when my nerve pains started- are the blood tests accurate?

Thanks so muhc

Greetings!

I am so sorry you have been dealing with these unexplained symptoms and understand how you feel! Celiac Disease can definitely affect the liver and pancreatic functioning. My father had pancreatic cancer (diagnosed in 1998) and lived for five years. I will always suspect that he was a latent Celiac (he was never tested for Celiac Disease). I have a chronic GI condition and was tested for Celiac Disease in 1999 (biopsy and blood labs) by a well respected Celiac Specialist. My results were negative. However, Almost three years ago, I started having many unexplained symptoms including muscle twitching and myoclonus (periodic limb movement at sleep onset) which were so severe that I was non-functional from lack of sleep. I had moved to Florida and was shuffled from doctor to doctor with no quality evaluation. I started researching the symptoms of Celiac Disease and finally realized that I needed to return for another consultation by my Celiac Specialist in Georgia last year. She ordered a CT scan (pancreas & abdominal area) and it was normal. My doctor advised me that some Celiacs have an IGA deficiency. This causes blood labs to return a False negatve result. She has another patient who also has muscle twitching as a symptom. Bottom line, You should pursue this based on your symptoms and family history. If you live in the southeast, I will be happy to share my doctor's name with you. She is extremely knowledgable, a great listener and will spend quality time to evaluate you.

Hope this helps you....this is your life :). Don't settle for a pill from an uniformed doctor as the answer.

Warmest regards,

Sylvia Ann

p.s. I remember when my father would have his tumor marker checked (CA-19). Although this is a lab tool, it is not an accurate indicator of tumor growth. My father's CA-19 actually dropped shortly before he passed away.

Lisa Mentor
Lisa
Posted
Note- I did have a lab test for celiac a long time ago when my nerve pains started- are the blood tests accurate?

Thanks so much

I would certainly take the Celiac Blood Panel again. This is what you should request from your doctor:

Antigliadin antibodies (AGA) both IgG and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

Some people here have order the stool test from Enterolabs. Although, Enterolabs cannot diagnose Celiac Disease, they can indicate a gluten and other food sensitivities. I have never seen an independent study as to the accuracy of Enterolabs stool tests, so I can' t say.

No test is as accurate as we would like at this time, therefore, a combination of tests; serology panel, endoscopy/biopsy and positive dietary response, are all pieces of the puzzle for a Celiac Disease diagnosis. Anyone one positive result of these, can be a good indicator that the disease is present.

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