Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Neurological Connections To Celiac

gemerald

Recommended Posts

gemerald Newbie
gemerald
Posted

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


nvsmom Community Regular
nvsmom
Posted

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.  :)

notme Experienced
notme
Posted

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?

ravenwoodglass Mentor
ravenwoodglass
Posted

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. 

gemerald Newbie
gemerald
Posted
  • Author

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.

treesahope Newbie
treesahope
Posted

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.

cristiana Veteran
cristiana
Posted

I'm just wondering if some of your new symptoms could be down to your developing a new type of migraine. There are so many different types of migraine out there.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Celiac.com Sponsored Post
      0

      An Inclusive Valentine's Day: Easy Tips for a Celebration Everyone Can Enjoy

    2. trents
      - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    3. SilkieFairy
      - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a...
    4. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    5. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,338
    • Most Online (within 30 mins)
      7,748
    Erica Johnson
    Newest Member
    Erica Johnson
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      IBS-D vs Celiac

      By trents · Posted

      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.