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gemerald

Neurological Connections To Celiac

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Hello. I'm a new poster in the forums, but I've read lots of comments in this forum before through Google searches and found the information here to be really helpful.

 

I was diagnosed with celiac about two and a half years ago. I'm 100% gluten free, and have been since my diagnosis (with a handful of unintentional exceptions, mainly early on).

 

As soon as I started the gluten-free diet I began feeling so much better. Within a month my migraines with aura and chronic diarrhea went away completely. I thought this was finally the answer to everything! But about a year ago I started to get new symptoms, including numbness, weakness, blurry vision, poor balance (I've fallen to the floor a couple of times), memory problems, speech problems, and extreme fatigue. They didn't all start at once, but progressed gradually one at a time. My doctor ruled out several things, including vitamin deficiencies (a few levels were borderline, but that was fixed with supplements), thyroid issues, and diabetes.

 

I'm now seeing a neurologist because my doctor suspects something neurological. I've had a clear brain MRI, but the neuro hasn't ruled out MS yet. I'm waiting on results on a spinal MRI, and blood work for lupus, rheumatoid arthritis, and a specific type of cancer.

 

I have a couple of questions.

Could these symptoms possibly be related to celiac, and is it even possible to develop new symptoms of celiac after going gluten free? Also, the neuro might want to do a spinal tap. I've read that celiac can cause the same banding signs in spinal fluid as MS, but is that only for people who aren't strictly following a gluten-free diet?

 

The neuro also suggested anxiety as a cause, but he's focusing less on that now that I've had some physical tests that point towards something neurological. When I was still eating gluten I got frequent anxiety and occasional panic attacks, but I haven't had any of that since a few months after going gluten free. Could years of gluten-related anxiety, and also migraines, cause permanent neurological damage? I doubt it, but thought it was worth asking.

 

Thanks in advance for any answers. I'm a little impatient waiting for these test results, and my neuro is admittedly not an expert in celiac.

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I would doubt that celiac disease is causing new symptoms after two and a half years gluten-free but there could be ongoing problems from damage done to the body by celiac disease that is not going to get better.  Neurological issues seem to be the ones that often linger after someone has gone gluten-free, that and pains.  There are some issues that just don't heal (darn-it) and they could be manifesting in new ways for you.

 

I know that celiacs can get the "white spots" on the brain that is seen in MS. I know brain injuries do not always heal... it could be celiac disease related.

 

Then again, celiac disease is an autoimmune disorder and once you have one, you are more likely to get another so it is possible that something else is going on.  :(

 

I'm sorry that I'm of little help.  I do understand your frustration of not knowing and waiting. I too have other issues that crop up and it's pretty maddening trying to figure out what is being caused by what. I have lingering issues with fatigue and arthritis that tend to drive me a bit batty. I know that after I put the effort into being gluten-free for long, it's frustrating when it only fixes some of the problems.

 

I'm sure others will chime in here...

 

Let us know how it goes, and welcome to the board.  :)

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yes, neuro problems seem to be the last to leave the party.  it's also one of my first symptoms of being glutened:  things get louder, i lose co-ordination, etc..  have you changed something in the past year that could have you getting glutened ?  new job, new sig other, new roommate, etc?  have you been re-tested to see what your antibodies are doing?

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Sorry you are having such a rough time right now. 

I had severe neuro impact before I was diagnosed and it did take a long time to resolve. However those symptoms were present before diagnosis and then slowly resolved with the help of a physical therapist. It concerns me that these issues have appeared for you after you had good resolution of your celiac related symptoms for so long. I am not a medical professional so I can't say one way or the other but in my opinion you are being wise to have these problems throughly checked out with your doctors. Unless you are getting glutened regularly I don't think celiac neuro symptoms would be appearing after you had been gluten free for so long. 

I hope the doctors are able to figure things out for you soon. 

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Thanks for the responses.

 

Apparently my lab work and MRI came back clear, so I don't know where to go from here. It feels like celiac all over again - a bunch of non-specific symptoms with no clear diagnosis. It took years for me to get a diagnosis of celiac because every doctor I saw told me it was all in my head. I'm so afraid that it's going to happen again, and I'm going to have to go through this for years, getting worse, with no answers.

 

I haven't made any changes, and I'm very strict with the gluten-free diet, so I know this isn't because of getting glutened. The few times I have been glutened I know about it within an hour.

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Thanks for the responses.

 

Apparently my lab work and MRI came back clear, so I don't know where to go from here. It feels like celiac all over again - a bunch of non-specific symptoms with no clear diagnosis. It took years for me to get a diagnosis of celiac because every doctor I saw told me it was all in my head. I'm so afraid that it's going to happen again, and I'm going to have to go through this for years, getting worse, with no answers.

 

I haven't made any changes, and I'm very strict with the gluten-free diet, so I know this isn't because of getting glutened. The few times I have been glutened I know about it within an hour.

I had lactose intolerance early in 1996, and was diagnosed in 2009 Celiac.  Now Gluten free, Diagnosed in 2012 with MS.  With MS, symptoms vary person to person.  I for example had symptoms of MS as early as 2003 yet had a clear brain MRI but no spinal test.  My suggestion is continue as Gluten free as you are, watch this  http://paleozonenutrition.com/2011/12/05/dr-terry-wahls-reverses-her-own-multiple-sclerosis-with-hunter-gatherer-nutrition/.%C2'> Eat healthy.  As healthy as you can.  Dr's are terrific helpers but nutrition is our own way of nurturing ourselves and our bodies.  I was a lucky one, where my symptoms were so severe and gone so long undiagnosed, it was very apparent when testing was done.  I am sorry you had to take so long for your Celiac diagnosis.

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