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Neurologist Vs Gastroenterologist

neurology related disorders neuropathy

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#1 ms_issippi

 
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Posted 24 August 2013 - 09:24 AM

I was diagnosed with celiac disease via biopsy last October. I began a gluten-free diet immediately, but did not notice significant changes in how I felt overall. This past April, after two episodes of sharp, intermittent pain on one side of my head, I was diagnosed with trigeminal neuralgia. No obvious physical causes were found - no tumor or MS on the MRI -  so I began taking anti-seizure medication to treat it. Three prescriptions later, we haven't been able to find a drug that works consistently without unacceptable side effects, so my next stop is a consultation with a neurosurgeon. 

 

Before brain surgery, though, I thought I should go back to my GI and make sure I had the celiac issues under control. They ran a whole mess of bloodwork, for celiac and other autoimmune issues (haven't gotten results back yet), but when I mentioned the connection between trigeminal neuralgia and celiac, the GI said he wasn't aware of/hadn't seen any evidence that those two things could be related. This seems to be in conflict with the information I've seen about celiac neuropathy, but I wondered if I was making an incorrect jump from that to TN. 

 

In short, neither my neurologist nor my GI seems to feel that there's a connection between my gut and my head, but I tend to disagree. Who's right, and if it's me, how do I make my case?


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#2 notme!

 
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Posted 24 August 2013 - 10:29 AM

i think you're right, but i am not a doctor or a scientist.  if your GI doesn't understand that celiac is systemic/affects your whole body, every system, maybe you need a new doctor.  in the 3 years i have been gluten free, i have had a myriad of seemingly unrelated problems resolve.  i had a headache that i didn't even know i had until it went away one day (but it took awhile on the diet)  i am calmer/less anxious, my balance has returned, i had night blindness (i couldn't drive at night) poof! gone.  i'm sorry you're going through this, but i would certainly look into other explanations before i let somebody do brain surgery on me :(  good luck (and welcome to the forum :) )


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arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

Celiac.com - Celiac Disease Board Moderator


#3 nutritionguy

 
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Posted 24 August 2013 - 10:40 AM

I was diagnosed with celiac disease via biopsy last October. I began a gluten-free diet immediately, but did not notice significant changes in how I felt overall. This past April, after two episodes of sharp, intermittent pain on one side of my head, I was diagnosed with trigeminal neuralgia. No obvious physical causes were found - no tumor or MS on the MRI -  so I began taking anti-seizure medication to treat it. Three prescriptions later, we haven't been able to find a drug that works consistently without unacceptable side effects, so my next stop is a consultation with a neurosurgeon. 

 

Before brain surgery, though, I thought I should go back to my GI and make sure I had the celiac issues under control. They ran a whole mess of bloodwork, for celiac and other autoimmune issues (haven't gotten results back yet), but when I mentioned the connection between trigeminal neuralgia and celiac, the GI said he wasn't aware of/hadn't seen any evidence that those two things could be related. This seems to be in conflict with the information I've seen about celiac neuropathy, but I wondered if I was making an incorrect jump from that to TN. 

 

In short, neither my neurologist nor my GI seems to feel that there's a connection between my gut and my head, but I tend to disagree. Who's right, and if it's me, how do I make my case?

Celiac disease is an immunologic disease that can be associated with other health problems including diabetes.   Although many people on this forum indicate that simple sugars are gluten free, the fact of the matter is that simple sugars (glucose, fructose, dextrose, lactose, sucrose, etc.) can worsen glucose tolerance, which in turn can worsen just about anything (including trigeminal neuralgia) depending on what your genetic make-up is.  Have you had a recent fasting blood sugar test done by any of your doctors?  


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#4 kareng

 
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Posted 24 August 2013 - 01:00 PM

  Although many people on this forum indicate that simple sugars are gluten free, the fact of the matter is that simple sugars (glucose, fructose, dextrose, lactose, sucrose, etc.) can worsen glucose tolerance, which in turn can worsen just about anything (including trigeminal neuralgia) depending on what your genetic make-up is.  

 

 

They are gluten free.  Diabetes is a separate issue.  I don't think this poster was asking about diabetes.  No need to confuse her more than she already is.  Her doctors are doing a good job of it.


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Once again, we come to the Holiday Season, a deeply religious time that each of us observes, in his own way, by going to the mall of his choice. - Dave Barry
 
“The main reason Santa is so jolly is because he knows where all the bad girls live.”  - George Carlin
 
“One can never have enough socks," said Dumbledore. "Another Christmas has come and gone and I didn't get a single pair. People will insist on giving me books.”  - J.K. Rowling, Harry Potter and The Sorcerer's Stone
 
 
 
 
 

 


#5 notme!

 
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Posted 24 August 2013 - 01:59 PM

They are gluten free.  Diabetes is a separate issue.  

lolz - right, i was like:  what?!   :blink:

 

also, i meant to add:  nerve damage is the last to heal.  if you have gone a long time with untreated celiac, chances are your body has alot of damage that needs to heal and the more your gut heals, the more vitamins and minerals you will absorb to 'correct' different damage.  i was/am still amazed at how far i have come as far as feeling better all around.  like i'm aging backwards or something :)


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arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

Celiac.com - Celiac Disease Board Moderator


#6 nutritionguy

 
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Posted 24 August 2013 - 03:02 PM

 

lolz - right, i was like:  what?!    :blink:

 

also, i meant to add:  nerve damage is the last to heal.  if you have gone a long time with untreated celiac, chances are your body has alot of damage that needs to heal and the more your gut heals, the more vitamins and minerals you will absorb to 'correct' different damage.  i was/am still amazed at how far i have come as far as feeling better all around.  like i'm aging backwards or something

 

With all due respect, this poster stated "neither my neurologist nor my GI seems to feel that there's a connection between my gut and my head".  The poster is searching for an explantation for the new onset neurologic symptoms she is having--which have not been improved by either the neurologist nor the GI specialist.  As I suspect that there are a number of people using this site with a diagnosis of other medical disorders in addition to Celiac disease (especially since Celiac disease has been genetically inked with other medical disorders), I am only suggesting the consideration of a possible alternative explanation for her recent onset neurologic symptoms.  The prevalence of diabetes in the U.S. population is about 8.3% according to the American Diabetes Association, and the Center for Disease Control has statistically projected that for child recently born, the lifetime risk is about 33%.  Most diabetes is type 2, and there is absolutely no question that diet and exercise are key to prevention and reversal.  Lastly, I personally have seen a number of individuals with neurologic symptoms from seizures to strange, undiagnosed neurologic problems significantly improve after changes to their diet...

 

By the way, this particular discussion section is Celiac Disease--Related Disorders and Research.  I happen to be DQ2 positive, which puts me at increased risk not only for Celiac Disease but also for Type 1 diabetes--the latter of which I have had for many years... 


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#7 bartfull

 
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Posted 24 August 2013 - 03:18 PM

I have had unexplained jaw pain with a lump under the jawbone and some swelling. I get the short sharp pains (I tell people it's "biting me"), and those pains are sometimes in the jaw, sometimes in my ear, and sometimes near my eye. On occasion the pain radiates to the back of my neck. Sometimes that's all I get is the "bites". Sometimes I get a deep ache that lasts for days or even weeks, interspersed with the bites.

 

I have noticed that even though I haven't been glutened except for one time since I went gluten-free, whenever I get corned or soyed (my other intolerances which are even harder to avoid than gluten), I have a flair-up in the jaw. It's funny to read your post today since just yesterday a friend suggested I look this up and see if it fits my symptoms. It doesn't fit exactly, but it's preferable to the OTHER thing my symptoms fit, which is something called adenoid cystic carcinoma. (That is a slow growing cancer that can take up to 15 years to kill you. In that one the pain moves around just like my pain does. And the pain and swelling come and go, just like mine does. I have had celiac I think for at least 12 years although I only went gluten-free a little over two years ago. I have had the jaw problem for a little over seven years now.)

 

Anyway, I didn't tell you this to scare you, but to thank you for giving me a different "excuse" for my pain. (I have no insurance so I can't get tested.) and no matter whether my pain is from celiac or from a totally unrelated cause, getting into one of my intolerances definitely makes it worse. I always figured that my body had only so much healing power and while it can normally keep things at bay (mostly) with my jaw, it can't fight two things at once. I think it could be the same for you - it might be caused by gluten or it might not, but no matter WHAT ails us,our celiac makes it worse.


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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#8 notme!

 
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Posted 24 August 2013 - 03:27 PM

absolutely celiac & diabetes walk hand-in-hand.  my son has type 1 diabetes and i have celiac.  so far, i haven't developed the 'betes' yet (and i am expecting it...  :(....) but i am almost certain he would test positive for celiac (he denies it) .  i'm sure all the bloodwork the op has had done will probably include a glucose test - surely someone would check for that if they have had all those other tests done as well.  

 in the 3 years i have been gluten free, i have had a myriad of seemingly unrelated problems resolve. 

 

 

Lastly, I personally have seen a number of individuals with neurologic symptoms from seizures to strange, undiagnosed neurologic problems significantly improve after changes to their diet...

 

so, we agree ;)


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arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

Celiac.com - Celiac Disease Board Moderator


#9 notme!

 
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Posted 24 August 2013 - 03:30 PM

barty, when i get 'soyed' i get an extra pain in the neck (my husband shows up  :P  lolz just kidding!) so, yeah, maybe inflammation from allergy/intolerance?  i imagine everything swells up and pinches nerves (or that's what it feels like) 


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arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

Celiac.com - Celiac Disease Board Moderator


#10 kareng

 
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Posted 24 August 2013 - 03:31 PM

 

With all due respect, this poster stated "neither my neurologist nor my GI seems to feel that there's a connection between my gut and my head".  The poster is searching for an explantation for the new onset neurologic symptoms she is having--which have not been improved by either the neurologist nor the GI specialist.  As I suspect that there are a number of people using this site with a diagnosis of other medical disorders in addition to Celiac disease (especially since Celiac disease has been genetically inked with other medical disorders), I am only suggesting the consideration of a possible alternative explanation for her recent onset neurologic symptoms.  The prevalence of diabetes in the U.S. population is about 8.3% according to the American Diabetes Association, and the Center for Disease Control has statistically projected that for child recently born, the lifetime risk is about 33%.  Most diabetes is type 2, and there is absolutely no question that diet and exercise are key to prevention and reversal.  Lastly, I personally have seen a number of individuals with neurologic symptoms from seizures to strange, undiagnosed neurologic problems significantly improve after changes to their diet...

 

By the way, this particular discussion section is Celiac Disease--Related Disorders and Research.  I happen to be DQ2 positive, which puts me at increased risk not only for Celiac Disease but also for Type 1 diabetes--the latter of which I have had for many years... 

 

 

 

The section is indeed ":Related Disorders"  but she was not talking about diabetes, which can be a related disorder to Celiac.  You weren't relating the diabetes to her issues, so it just looked like you were saying people with Celiac can't have sugar with an implication that sugar isn't gluten-free.  By all means, explain the neurological symptoms of diabetes that might relate to what she is experiencing.


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santa-dance.gif

 

Once again, we come to the Holiday Season, a deeply religious time that each of us observes, in his own way, by going to the mall of his choice. - Dave Barry
 
“The main reason Santa is so jolly is because he knows where all the bad girls live.”  - George Carlin
 
“One can never have enough socks," said Dumbledore. "Another Christmas has come and gone and I didn't get a single pair. People will insist on giving me books.”  - J.K. Rowling, Harry Potter and The Sorcerer's Stone
 
 
 
 
 

 


#11 ms_issippi

 
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Posted 26 August 2013 - 07:54 AM

Thank you all for the input. The nurse practitioner I saw at my GI's office actually said that my initial endoscopy results showed inflammation (esophagus, stomach, duodenum) that could be caused by any number of issues, including other food intolerances, so I'm even more addled by the potential sources of my pain.

 

I also asked the NP to clarify if the biopsy results definitely showed celiac, and she said that the results were "most likely consistent" with celiac but could possibly be from an intolerance or allergy. I've never heard that biopsy-diagnosed villi damage could be from a source other than celiac disease and the idea that I could be misdiagnosed is incredibly frustrating. Isn't the immunological destruction of villi the hallmark, and most dangerous element, of celiac disease? 


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#12 kareng

 
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Posted 26 August 2013 - 08:07 AM

Here's some info. You might want to look at this website for more info.  I would also get copies of any tests and biospies and look for your self.

 

 

http://www.curecelia...with-neuropathy

 

 

This is why they like to have a positive blood test and biopsy

 

http://www.curecelia...-celiac-disease


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santa-dance.gif

 

Once again, we come to the Holiday Season, a deeply religious time that each of us observes, in his own way, by going to the mall of his choice. - Dave Barry
 
“The main reason Santa is so jolly is because he knows where all the bad girls live.”  - George Carlin
 
“One can never have enough socks," said Dumbledore. "Another Christmas has come and gone and I didn't get a single pair. People will insist on giving me books.”  - J.K. Rowling, Harry Potter and The Sorcerer's Stone
 
 
 
 
 

 


#13 ms_issippi

 
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Posted 27 August 2013 - 06:10 AM

Ah, I see. I've done a lot of reading over the past ten months, but I guess I didn't put all of that together. I went to the GI last week with the thought that a celiac panel would reveal if I was still ingesting gluten by accident, but now if I get a negative result I'll be all the more questioning of my diagnosis. I'm supposed to go back in a month, so I think I'll plan to gluten-challenge the week before and have them draw the panel again for comparison. 

 

Meanwhile, I see the neurosurgeon tomorrow, so I'll be bringing the U of C neuropathy info to discuss. 


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#14 kareng

 
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Posted 27 August 2013 - 06:39 AM

Ah, I see. I've done a lot of reading over the past ten months, but I guess I didn't put all of that together. I went to the GI last week with the thought that a celiac panel would reveal if I was still ingesting gluten by accident, but now if I get a negative result I'll be all the more questioning of my diagnosis. I'm supposed to go back in a month, so I think I'll plan to gluten-challenge the week before and have them draw the panel again for comparison. 

 

 

 

 

It should be negative.  You have been eating gluten-free.  You were diagnosed already.  Everyone is supposed to have a yearly blood draw just to make sure they are on the right track.  Just to make sure they didn't miss something that has gluten.


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santa-dance.gif

 

Once again, we come to the Holiday Season, a deeply religious time that each of us observes, in his own way, by going to the mall of his choice. - Dave Barry
 
“The main reason Santa is so jolly is because he knows where all the bad girls live.”  - George Carlin
 
“One can never have enough socks," said Dumbledore. "Another Christmas has come and gone and I didn't get a single pair. People will insist on giving me books.”  - J.K. Rowling, Harry Potter and The Sorcerer's Stone
 
 
 
 
 

 


#15 ms_issippi

 
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Posted 27 August 2013 - 06:57 AM

But can I trust my initial diagnosis? I didn't have a blood draw at the time - I changed jobs and temporarily lost insurance right after my endoscopy/biopsy. At this last visit, the nurse practitioner said my chart showed eosinophilic esophagitis, and that got her saying there could be other non-celiac causes. She wasn't clear on whether that could mean "in addition to" or "in lieu of" celiac disease and I feel like I need a more definite answer if the biopsy wasn't actually conclusive. I brought up the idea of genetic testing (in part because my son is short-statured) and neither she nor the GI had much knowledge about it. 


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