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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Does Anyone See A Neurologist And What Do They Do For You.
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18 posts in this topic

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

 

 

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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.
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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.  

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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.

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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.

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

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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)

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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.

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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.

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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...

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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

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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

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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!!)  :) 

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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

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

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I agree with GFinDC about the possibility of diabetes.

 

For me, if too many things start to feel out of synch with my body, I have resigned myself to a thorough check up. I'll consent to blood work and labs,scans... Talk openly about all my concerns. I've found that if I tell dr  what my ailments are, as opposed to what I think the diagnosis is, the dr & I have been able to work together more effectively. In this way too, I have also dismissed a few drs because they weren't good "team" players. When it comes to my healthcare, I am not looking for someone to tell me what to do. I want them to help me better understand my body so that I can take care of it the way it needs to be (like a coach takes care of a team). After all, it's MY body, not theirs!! This may also lessen the time it takes to make a good diagnosis.

Lastly, even with the best of drs, I will go home and research what I've learned.(it deepens the understanding as well!).... and then pray that God keeps you in good hands! ....and then trust Him!   :)

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Thanks, you two.  I have been checked for diabetes, perhaps someone will care to check again.  My blood sugar levels have been good.  I don't eat sweets as a general rule and watch carbs besides.

 

Yeah, this doctor visit I didn't try to hide anything.  I didn't really care if she thought I was a bit loco.  I just told her what symptoms I was having and let her deal with it.  She actually didn't have too much to say about it all, but she did say that she would do whatever I wanted if she could.  She sounds like a keeper.   She did ask for my records which should be on the way to her within 60 days.

 

D

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Oh, that's great news! Amazing how we get all thrown out of whack for a few days and it makes us look at all kinds of crazy theories. However, having a kick in the arse to get down to the bottom of a problem, even if it isn't as serious as we feared, is not a bad thing. Great to know your new doctor is being helpful!

 

I was just thinking about your situation, since I'm sitting here feeling all tingly-fingered and am wondering whether I shouldn't up my Vitamin B intake and see if that helps. I was also thinking that I should schedule that neurologist follow-up I've been putting off so I can ask about other things, like peripheral neuropathy, etc (though he's kind of an old, by-the-book, "oh that doesn't sound like anything to worry about" kind of guy, so I'd probably just get a blank look).

 

Hope you can stay healthy now that you've found the cc culprit.

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