Jump to content

Follow Us:  Twitter Facebook RSS Feed            




   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Ads by Google:
Celiac.com Sponsor:                                    


Photo
- - - - -

Neurologist Vs Gastroenterologist

neurology related disorders neuropathy

  • Please log in to reply

21 replies to this topic

#16 kareng

 
kareng

    Gobble! Gobble!

  • Moderators
  • PipPipPipPipPipPip
  • 14,240 posts
 

Posted 27 August 2013 - 07:20 AM

If you want to do a gluten challenge, at least do enough challenge to make it more likely to be correct.

 

 

http://www.curecelia...luten-challenge   What is a gluten challenge?

A gluten challenge is the period of time when gluten is added back into a person’s diet to assist in the diagnosis of celiac disease. Antibodies take time to build into the blood stream before they can be detected through blood analysis. For a gluten challenge we recommend eating 1/2 slice of bread or a cracker each day for the duration of the challenge.

  • Prior to blood testing we recommend 12 weeks of eating gluten.
  • Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten.

In the case of a severe reaction to gluten, a medical professional may opt to shorten the 12-week challenge and move immediately to an endoscopic biopsy


  • 0

Thanksgiving dinners take 18 hours to prepare.  They are consumed in 12 minutes.  Half-times take 12 minutes.  This is not a coincidence.  - Emma Bombeck
 
dancing-turkey.gif
 
 
 
 

 


Celiac.com Sponsor:

#17 ms_issippi

 
ms_issippi

    New Community Member

  • Advanced Members
  • Pip
  • 12 posts
 

Posted 28 August 2013 - 08:50 AM

Well, I saw the neurosurgeon today and, like my GI, he also said he wasn't aware of any connection between celiac disease and trigeminal neuralgia. He more clearly defined mine as the atypical form, which means it doesn't respond well to medication but is also a bad candidate for surgery. I pulled out the University of Chicago's description of celiac-related neuropathy, which includes one-sided facial/head pain, but he felt that was a totally separate entity. I need to do some serious medical literature digging to find some information that will inform both of these doctors that there is a known relationship between TN and celiac disease, at least in that the rates of each are higher in patients with the other. 


  • 0

#18 ms_issippi

 
ms_issippi

    New Community Member

  • Advanced Members
  • Pip
  • 12 posts
 

Posted 30 August 2013 - 11:06 AM

The nurse called with my lab results today and said everything was normal, although when I asked her to give me more specifics, she said I had some abnormalities in my monocyte and lymphocyte results but "nothing to be concerned about." My celiac panel was negative, which either means I've been doing really well with my diet or was misdiagnosed in the first place. B12 normal, iron and vitamin D on the low side of normal.

 

At least I know that ongoing celiac damage isn't the cause of my trigeminal neuralgia, which was my initial goal. I feel like I've found some worms under these rocks, though.


  • 0

#19 T.H.

 
T.H.

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,816 posts
 

Posted 01 September 2013 - 03:03 PM

"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?"

 

Obviously, that's hard to tell but...I'd say that at the very least, your Gi and neurologist both sound pretty ignorant about possible affects of celiac disease, at the very least. I belong to a celiac group in my town and most of those with neurological issues got little to no help from their GI docs. Neurologists don't seem to know about celiac disease much in general unless you're lucky.

 

But...don't know if this helps, but I've seen a little on the trigeminal neuralgia and one thing some of the literature said is that there may be some connection to blood flow, I think? I don't know a lot about it. But there has been one study I've seen on celiac disease and the fact that it may affect blood flow in our brains if we are getting gluten. So, that might be worth taking to the neurologist maybe and asking them if something like this could potentially trigger your condition, perhaps? Or exacerbate it, if you still have enough gluten in your diet to cause a little inflammation in the gut.

(study: http://www.ncbi.nlm....pubmed/14984816 )

 

I know there are other studies on the brain and celiac disease, too, including what looks like a separate antibody that may affect the nervous system, NOT the gut, in some celiacs if they get gluten (article: http://www.celiac.co...ders/Page1.html ).

 

If you look up gluten ataxia or the TG6 antibody, that can find you some more research to share with both the GI doc and the neurologist, if you wish to stay with them and educate them a bit.


  • 0

T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#20 Bo zana

 
Bo zana

    New Community Member

  • Members
  • Pip
  • 1 posts
 

Posted 23 September 2013 - 10:37 PM

I have the same issue!

My eyes have been the problem- especially one side. Occasional slight pain above the eye, but mostly goopy, blurry etc, for which no Dr. could see a reason inside the eye.

Trigeminal Neuralgia was listed the MRI interpretation by the Dr. administrating the test: MRI BRAIN WITH AND WITHOUT GADOLINIUM. He stated everything looked normal except some subtle evidence of enhancement through the descending facial nerve on the left, this can be a variation of normal but can be signs of inflammation as well.

The neurologist said "it's nothing", did nothing, recommended nothing and I remain the same with problems in my eye and a debt on my credit card.


  • 0

#21 ms_issippi

 
ms_issippi

    New Community Member

  • Advanced Members
  • Pip
  • 12 posts
 

Posted 24 September 2013 - 08:52 AM

I met with my neurologist for a follow-up and had a very frustrating visit. He went over the notes from the neurosurgeon and, after basically accusing me of lying because he had written information down incorrectly, said that the surgeon didn't think I have trigeminal neuralgia, but rather some for of atypical facial pain or migraine disorder. Which is not what the surgeon told me - like I wrote above, he said it was the atypical presentation of TN. The neurologist also said there wasn't anything else that could be done besides medication, which I've since learned isn't actually true, but since I didn't want to keep trying new meds (I've been through three with a fourth sitting in my bathroom unopened), we agreed I'd just come back in a year for my refill appointment. This doctor came highly recommended, but it's clearly not a good fit. In an odd coincidence, the nurse practitioner at my GI's office actually told me she'd fired this same neurosurgeon because of the way he treated her mother after a stroke.  


  • 0

#22 ms_issippi

 
ms_issippi

    New Community Member

  • Advanced Members
  • Pip
  • 12 posts
 

Posted 26 September 2013 - 09:09 AM

Okay, so I finally got my hands on the actual labs, and the flagged results are:

MCH (H):  32.1 pg (ref 27.0-31.0)

Monocytes: (L): 3.2% (ref 5.0-10.0)

Absolute Lymphocytes (L): 0.97 K/ul (ref 1.00-4.80)

Absolute Monocytes (L): 0.12 K/ul (ref 0.16-1.00)
Iron (L): 46 ug/dL (ref 50-170)

Total Iron Binding (L): 247 ug/dL (ref 250-400)

INR Value (L): 1.06 (ref 2.0-3.0)

Rheumatoid factor (H): 26 IU/ml (ref <14)

Vitamin D (L): 25 ng/mL (ref 32-100)

 

Does anyone have any insight on these? No one discussed the high RF result with me, but it's a GI office so maybe they didn't think it was a priority?


  • 0





0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: