Neurologist Vs Gastroenterologist

[ms-issippi]

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?

[notme]

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 )

[nutritionguy]

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?  

[kareng]

  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.

[notme]

They are gluten free.  Diabetes is a separate issue.  

lolz - right, i was like:  what?!  

 

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

[nutritionguy]

 

lolz - right, i was like:  what?!   

 

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... 

[bartfull]

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.

[notme]

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

[notme]

barty, when i get 'soyed' i get an extra pain in the neck (my husband shows up   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) 

[kareng]

 

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.

[ms-issippi]

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? 

[kareng]

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.

 

 

Open Original Shared Link

 

 

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

 

Open Original Shared Link

[ms-issippi]

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. 

[kareng]

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.

[ms-issippi]

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. 

[kareng]

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

 

 

Open Original Shared Link   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

[ms-issippi]

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. 

[ms-issippi]

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.

[T.H.]

"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: Open Original Shared Link )

 

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: https://www.celiac.com/articles/21637/1/Tg6-Antibody-Plays-a-Key-Role-in-Celiac-Disease-Related-Neurological-Disorders/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.

[Bo zana]

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.

[ms-issippi]

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.  

[ms-issippi]

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?

[AnniesVision]

On August 24, 2013 at 10:24 AM, ms_issippi said:

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?

I believe that you are right. I went decades with undiagnosed celiac disease and leaky gut sets anyone up for an auto immune response. The body is confused (and my mind) and therefore, odd problems pop up that you most likely would not have had without first having celiac disease. 

When I rec'd the diagnosis of celiac disease, I thought "Yippee..everything will be just fine now". Granted, I was better minus gluten in my body, but had no clue that other problems were to come. 

Trigeminal Neuralgia is not for wimps!

Best wishes to you.. and to all of us brave souls that balance these issues daily!

 

 

[AnniesVision]

On September 24, 2013 at 9:52 AM, ms_issippi said:

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.  

I am just going to throw a question out there. Since I believe in starting with small interventions and building tonight if you must, have you thought of seeing a good naturopath? I am a retired RN so eastern sorts of medicine was so foreign to me. However, if you have a really good naturopath, it is truly amazing the positive results you can receive from treatment. They don't just treat the symptoms, they address the problem. 

I am guessing tou were out on Carbamazepine or Tegretol. Because those of us with celiac disease also seems to be more food sensitive and drug sensitive, you are smart to be concerned about the meds. Tegretol can have some nasty side effects. I understand that some people out there most take it, and of course support anything anyone must do. However, if you have options, like seeing a naturopath, I sure would recommend you give that a try. 

Best of care to you!

katy