Jump to content



   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Ads by Google:
Celiac.com Sponsor:                                    


Photo
- - - - -

Does Anyone See A Neurologist And What Do They Do For You.


  • Please log in to reply
17 replies to this topic

#1 1desperateladysaved

1desperateladysaved

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 2,033 posts

Posted 21 January 2014 - 01:27 PM

I got told in another thread to see a neurologist.  Does anyone see a neurologist for their celiac.  I recall one on the summit talking about white lesions in the brain.  He was treating such things with diet and supplements.  I think that is probably rare, but would like to know more about it.

 

If you would care to PM me or post here, I would appreciate it.

 

D

 

 


  • 0

Celiac.com Sponsor:

#2 kareng

kareng

    Advanced Community Member

  • Moderators
  • PipPipPipPipPipPip
  • 13,543 posts

Posted 21 January 2014 - 01:47 PM

I got told in another thread to see a neurologist. Does anyone see a neurologist for their celiac. I recall one on the summit talking about white lesions in the brain. He was treating such things with diet and supplements. I think that is probably rare, but would like to know more about it.

If you would care to PM me or post here, I would appreciate it.

D

I think we told you that because you seemed to think you had a lot of neurological issues, brain damage and MS. Neurologists aren't going to treat you for celiac Disease but if you have MS or brain damage, those are serious diseases. You had stated that having an MS or brain damage diagnosis meant nothing to you and you wouldn't change or follow any treatment for it. I think that is why a neurologist was suggested.
  • 0

Celiac.com - Celiac Disease Board Moderator
 

LTES

 

You better cut the pizza in four pieces, because I'm not hungry enough to eat six. ~Yogi Berra

 

smiley-eating-pizza-slice-emoticon.gif

 


#3 Ms.Lisa

Ms.Lisa

    New Community Member

  • Advanced Members
  • Pip
  • 11 posts

Posted 21 January 2014 - 02:07 PM

I saw a  neurologist for years due to bad migraines.Once I was diagnosed with celiac & went Gluten-Free I have not suffered from a migraine since. I don't think a neurologist would be able to help with celiac.  


  • 0

#4 cyclinglady

cyclinglady

    Advanced Community Member

  • Moderators
  • PipPipPipPipPipPip
  • 1,370 posts

Posted 21 January 2014 - 02:16 PM

You would want to see one if your myelin was being damaged causing eye damage, paralysis, severe pain, etc. My MIL died from it. I would think you would want to rule it out. Problems may stem from celiac disease, but I would want to be sure. It is a horrible way to suffer and die. My MIL was a saint and she never screamed in pain in front of us, but we heard her on the way out. I miss her.
  • 0
Diagnosed via Blood Test and Endoscopy: March 2013
Hashimoto's Thyroiditis -- Stable 2014
Anemia -- Resolved
Fractures (vertebrae): June 2013
Osteopenia/osteoporosis -- June 2013
Allergies and Food Intolerances
Diabetes -- January 2014




Celiac.com - Celiac Disease Board Moderator

#5 Adalaide

Adalaide

    It needs to be about 20% cooler.

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,247 posts

Posted 21 January 2014 - 11:15 PM

There can be a lot of problems or diseases that are linked to celiac that are neurological in nature. Because I have issues unresolved on a gluten free diet (and actually worsening over the last year) I will see a neurologist to get a diagnosis of the problem. Only a diagnosis of the underlying cause can help you to make an educated decision about what the best course of action is for you, but if you are having neuro issues it is best to see someone before there is irreparable harm. Even if you make a decision not to follow the generally medically accepted course of treatment, at least it will have been your choice rather than having things happen to you simply out of ignorance. When it comes to what neuro conditions can do to a person, ignorance is anything but bliss.


  • 0

"You don't look sick or anything"

"Well you don't look stupid, looks can be deceiving."

 

Celiac DX Dec 2012

CRPS DX March 2014


#6 1desperateladysaved

1desperateladysaved

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 2,033 posts

Posted 22 January 2014 - 05:12 AM

Not even sure I am having neuro issues, whatever they are.  I can look it up though, I guess.


  • 0

#7 Pegleg84

Pegleg84

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 589 posts

Posted 22 January 2014 - 10:13 AM

A neurologist can help you find out if you do have any neurological problems, which may or may not be caused by celiac disease. All the tests are annoying to go through, but it's better to go through them and know what you're dealing with, then you can determine what you want to do about it.

 

(speaking of which, I still need to go for a follow-up with mine... every time I go he sends me for another scan... I'd like to go a year without being stuffed in an MRI machine, thank you)


  • 1

~ Be a light unto yourself. ~ - The Buddha

- Gluten-free since March 2009 (not officially diagnosed, but most likely Celiac). Symptoms have greatly improved or disappeared since.
- Soy intolerant. Dairy free (likely casein intolerant). Problems with eggs, quinoa, brown rice

- mild gastritis seen on endoscopy Oct 2012. Not sure if healed or not.
- Family members with Celiac: Mother, sister, aunt on mother's side, aunt and uncle on father's side, more being diagnosed every year.


#8 Adalaide

Adalaide

    It needs to be about 20% cooler.

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,247 posts

Posted 22 January 2014 - 11:36 AM

Few neurologists (in my experience) will take a patient without a referral from a doctor. Frankly, after talking to so many receptionists and hearing so many ask what doctor would be referring me I would hesitate to trust one who felt they needed to take patients "off the street" without a referral. Your doctor can also help you decide if seeing a neurologist is what you need to do, before you spend the money on it. I expect my initial appointment tomorrow to last 30-45 minutes and cost approximately $300-400, so something like $10 a minute. Having a doctor help sort out which sort of specialist you should be seeing can save you hundreds, or even thousands of dollars. Especially if you're seeing the wrong sort of specialist and having unnecessary and expensive tests done that you wouldn't have had if you had seen the correct specialist in the first place.


  • 2

"You don't look sick or anything"

"Well you don't look stupid, looks can be deceiving."

 

Celiac DX Dec 2012

CRPS DX March 2014


#9 1desperateladysaved

1desperateladysaved

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 2,033 posts

Posted 22 January 2014 - 11:58 AM

Thanks, I did see an MD.  She thought I just had "tired brain" nothing to worry about.  She is looking more into my background though, for some reason (Probably me) they had no records from past doctors.  I just am not sure how far to trust on one MD's  opinion from one visit alone.


  • 0

#10 Pegleg84

Pegleg84

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 589 posts

Posted 23 January 2014 - 11:10 AM

I keep forgetting I'm in Canadaland with our evil socialized medicine. My doctor has sent me to all the specialists she can think of. It's usually a long wait to see someone though, and then another long wait for tests, then another long wait for follow-up...


  • 0

~ Be a light unto yourself. ~ - The Buddha

- Gluten-free since March 2009 (not officially diagnosed, but most likely Celiac). Symptoms have greatly improved or disappeared since.
- Soy intolerant. Dairy free (likely casein intolerant). Problems with eggs, quinoa, brown rice

- mild gastritis seen on endoscopy Oct 2012. Not sure if healed or not.
- Family members with Celiac: Mother, sister, aunt on mother's side, aunt and uncle on father's side, more being diagnosed every year.


#11 GF Lover

GF Lover

    Melanoma Warrior

  • Moderators
  • PipPipPipPipPipPip
  • 1,425 posts

Posted 23 January 2014 - 06:02 PM

Diana, In your old topic the issue was your eyes and we said you might want to see an Opthomologist.  Then you started talking about MS and Brain Damage.  We then suggested a Neurologist .  An Opthomologist deals with eyes and a Neurologist deals the the head.

 

You may need to spend some time getting copies of records from all of you doctors, functional, chiropractic and whichever ones you have also seen.  Put the records in chronological order to give the MD some sense of time frame and when certain issues came up and treatment for it.  This will be the only way a MD wiill be able to make sense of your records.

 

Good Luck

 

Colleen


  • 0

:D HAVE A SUPER SHINY DAY :D

 

LTES gem 2014

*BiPolar, Major Depression, Anxiety *Hypothyroidism, *Celiac

*Metastatic Melanoma, *Immunotherapy Mitigated Vitiligo, *General Insanity

"We cautiously travel through life to arrive safely at our death" - J. R. C. , my Son.

 

Are We There Yet? and Dad says...All you have to do it ride it out.

 

Comments/views/opinions expressed on the site are my own and are not representative of Forum Admin/Owner

Celiac.com - Celiac Disease Board Moderat


#12 1desperateladysaved

1desperateladysaved

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 2,033 posts

Posted 23 January 2014 - 08:06 PM

Thanks for the concern.  I think I am just having a bad week.  I believe I got a cross contaminated locally grown product in my life a few weeks back.  I had quite enough of it over time and have spent time with my brain fog back.   I also have a friend that went blind and got diagnosed with MS. I realized that MS had a possible gluten connection, so that is why I mentioned it.   I rather dreaded the appointment with the new MD, and to be having trouble with foggy brain at the same time made it harder.

 

The MD looked like she wasn't buying my celiac diagnosis.  However, as I described the nutrients I had been  low in, she began to relax.  Then she asked if the nutrient levels had come up.  I answered in the affirmative and she looked excited.  She seemed really ready and willing to help me.  I just had all my recent health practitioners send her information and will see how my thyroid test and iron tests come out.  My former MD had told me that I should feel totally better after a few days gluten free, but this one said that it could take a couple of years.  Shew!  Yeah, recovering from 30 plus years isn't always a piece of cake.

 

Today I am feeling brighter again.  I still don't know if I can trust the MD's verdict on the eyes.  I will be asking more opinions of my other doctors.  I will keep considering other specialists and diseases.  I will get better if I can.  And I won't buy that cross contaminated product again!

 

Maybe this information should have gone in my blog.

 

I do feel a person is responsible for their own health care.  I am in over my head.  I use to nearly pass out in elementary school when the name "health" was brought up.  Now, here I am trying to figure out everything, so as to take nothing blindly all on my own. I will be carried through it!

 

D


  • 0

#13 heymom45

heymom45

    New Community Member

  • Advanced Members
  • Pip
  • 16 posts

Posted 24 January 2014 - 07:29 AM

hey Diana.. it sounds like you are trying really hard to get a handle on all of this "health" stuff. It's not easy! And when friends/loved ones struggle we can feel helpless and overwhelmed for them. Sorry to hear about your friend with MS.

 

A few years ago, I went to dr because of pain in my feet.  When my feet get cold, or are inactive for a bit (20 mins or more), there is a cringing pain in my feet when I do get up to walk. Metaphorically speaking, it feels like my feet are made of glass and the toes and balls of my feet just shattered. After a few careful "soft" steps, the pain is gone. Since there was nothing wrong with my feet otherwise, he did blood tests. Turns out I'm B12 deficient!! He suggested shots.... no way, I can't handle them!!  They're really the only thing I am a baby about~bad childhood experiences I guess.  Anyway, it turns out that nerve damage/issues and vision problems can be related to B12 deficiency. Now if I could only remember to take my vitamins everyday!! :s

 

I recently got really honest with a new primary dr. I told her that I have only had a few major health issues (unfortunately, when I do have them, they tend to be serious and without too much warning!!). I also told her I'm not a big fan of check-ups & preventive tests, but that I do listen well to my body!! .... one of my concerns was how celiac could impact my overall health given my age and health history (6 kids, blood clots, brainstem bleed, celiac..) or if celiac typically leads to other health issues related to age. 

Sigh of relief!!  Celiac does not really lead to much of anything else (dr words turned into simple words!! lol). And to be sure she gave referral to GI dr. He said celiac does not increase health risks as long as I follow the diet. The only thing we are at higher risk for is lymphoma, but he said it still is a very slight risk. She also gave me referral to neurologist (because the brainstem bleed needs periodic monitoring w/MRI), who also said celiac is not directly related to brain issues. It's not likely she would have referred me to neuro if I had not had this other neuro issue.

Of course, these answers were given under the assumption I was following a gluten-free diet.So be encourage, and eat right!! (and take your vitamins!!)  :) 


  • 0

#14 1desperateladysaved

1desperateladysaved

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 2,033 posts

Posted 24 January 2014 - 11:27 AM

I surely was deficient in B12, but the levels have come up.  My sense of touch is not what it should be, but I do feel pain now when I need to.  I recollect a time when I set my finger on the stove, when I saw smoke coming up, I felt the pain finally.  Now, I feel the pain right away.  Would a neurologist handle this type of problem? 

 

I don't need to refer myself or anything, I just need to figure things out.

 

D


  • 0

#15 GFinDC

GFinDC

    A little farting never hurt anybody... :-).

  • Advanced Members
  • PipPipPipPipPipPip
  • 4,077 posts

Posted 25 January 2014 - 07:24 AM

Nueropathy can be caused by diabetes also.  Nurrologists deal with things related to nerves, which includes the brain also.


  • 0
Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul


0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: