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

Worried About Neurological Symptoms

Nan2N

By Nan2N
in Related Issues & Disorders

Recommended Posts

Nan2N Explorer
Nan2N
Posted

I've started getting the shakes really bad since going gluten free. My hands used to shake and I had trouble writing before being diagnosed, but now my hands shake really bad and so does my left leg and foot. The brain fog has lifted a little bit, but it still feels like half my brain is shut off. I'm worried that these may increase or not get better even though I'm gluten free. I have been extremely careful about being gluten free so I don't think I'm still getting any by accident. I've read a lot about the neurological effects from celiac and am really concerned because I didn't get the upset stomach or anything, just the brain stuff.

Does anyone have any information on that part of the disease? Has anything like this happened to anyone else? It's got me really worried that I won't get my sharp brain back. And I would sure hate to find out it can still get worse after going gluten free.

Thanks for the info.

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted
I've started getting the shakes really bad since going gluten free. My hands used to shake and I had trouble writing before being diagnosed, but now my hands shake really bad and so does my left leg and foot. The brain fog has lifted a little bit, but it still feels like half my brain is shut off. I'm worried that these may increase or not get better even though I'm gluten free. I have been extremely careful about being gluten free so I don't think I'm still getting any by accident. I've read a lot about the neurological effects from celiac and am really concerned because I didn't get the upset stomach or anything, just the brain stuff.

Does anyone have any information on that part of the disease? Has anything like this happened to anyone else? It's got me really worried that I won't get my sharp brain back. And I would sure hate to find out it can still get worse after going gluten free.

Thanks for the info.

What you are describing is very common among us. Injections of B-12 helped me tremendously. Gradually I was able to take B-12 by mouth.

Things will improve, but sometimes it seems like it takes forever. Hang in there.

ravenwoodglass Mentor
ravenwoodglass
Posted

I know how scarey things like that can be. It can take awhile for the brain and nerves to repair but usually they will. Are you getting plenty of protein? That can help a bit and do heed the B12 suggestion. If you don't want to do shots if you get some sublingual B12 that should help a great deal.

I was very far advanced neurologically when I was diagnosed. For the most part I have healed. I even have the reflexes back that I lost at about age 7, almost 40 years before I was finally diagnosed correctly. You should notice some resolution within about 2 to 3 months of your neuro stuff. If your trembling gets worse or does not improve do make sure to get things checked out though.

Nan2N Explorer
Nan2N
Posted
  • Author
I know how scarey things like that can be. It can take awhile for the brain and nerves to repair but usually they will. Are you getting plenty of protein? That can help a bit and do heed the B12 suggestion. If you don't want to do shots if you get some sublingual B12 that should help a great deal.

I was very far advanced neurologically when I was diagnosed. For the most part I have healed. I even have the reflexes back that I lost at about age 7, almost 40 years before I was finally diagnosed correctly. You should notice some resolution within about 2 to 3 months of your neuro stuff. If your trembling gets worse or does not improve do make sure to get things checked out though.

Actually I was told by my dietician that I'm eating too much protein! I've been trying very hard to gain some weight. I'm waiting on blood results that will check for B12. Can you get the shots without the doctor thinking you need them? And where do you get the sublingual B12...at the health food store? My doc told me I don't have malabsorption by my blood work I had done previously. Even though I've lost 30 pounds.I had been taking vitamins which probably threw everything off. I stopped the vitamins for the B12 test. They're checking other vitamins too. How long should I give the shakes? I'm sure my doc is sick of seeing me for all my complaints.

Thanks

CuriousOne Apprentice
CuriousOne
Posted

I am gluten intolerant myself. I may have celiac, I haven't been tested. I never seemed to have GI issues until I decided to go time without gluten...then when I reintroduced it, I had some pretty horrible GI symptoms.

To this day now I get GI symptoms. It depends on how much gluten I eat, things like that.

More of my symptoms are neurological, and always have been. Sad.. I spent from 5th grade to just recently in depression. Probably 10 of those years I was suicidal daily. Many many of those years depression so extremely deep...SO SO SO SO SO SO DEEP. A kid in 8th grade shouldn't be going through that. I never had a normal high school or middle school experience. It was more like torture/hell to me... even college wasn't easy...although finally I experienced what normal was like when I took Paxil.

Neways to the point. how insidious this is... last weekend I had a few cookies and a few pita chips. then to top off the weekend I had 2 huge bowls of oatmeal raw. I had some minor GI issues..not much...

But then I seemed to enter a depression again...and I'm only now coming out of it. Its so insidious, because even though I knew I ate gluten...it didn't matter. The depression became part of me. Suicidal thoughts even.. thinking how life wasn't worth it. To top it off I wasn't sleeping that much... which always makes it all worse.

But yeah. I'm finally coming out of that whole mess. Just from that small amount of gluten. And it was like I was blinded by the whole thing the whole time. How crazy is that. So I definitely understand you... as gluten mainly affect me in the head. How?? I wish I knew the exact mechanism...I just wish I knew.

G'luck. Stay away from gluten!

ravenwoodglass Mentor
ravenwoodglass
Posted
Actually I was told by my dietician that I'm eating too much protein! I've been trying very hard to gain some weight. I'm waiting on blood results that will check for B12. Can you get the shots without the doctor thinking you need them? And where do you get the sublingual B12...at the health food store? My doc told me I don't have malabsorption by my blood work I had done previously. Even though I've lost 30 pounds.I had been taking vitamins which probably threw everything off. I stopped the vitamins for the B12 test. They're checking other vitamins too. How long should I give the shakes? I'm sure my doc is sick of seeing me for all my complaints.

Thanks

It can take a very long time for the B12 deficiences to show up in blood work. They watched mine drop from over 500 to 212 over a year and still said everything was fine. Finally the neuro said that even though my levels were still technically in the normal range that I should get the sublingual B12 anyway to see if it helps. I was prediagnosis at the time, they thought I had MS, but even still consuming gluten it helped a great deal. He said after I was at last diagnosed that when you have celiac you are not able to utilize B12 from your food or from regular supplements due to the damage to the GI tract. There are very few of us who will not benefit from taking it. You can not take too much B12, what your body doesn't need it will 'pee' out.

darlindeb25 Collaborator
darlindeb25
Posted

I get my B12 from www.Lame Advertisement.com . It's called Biochem Superior B12, made by Country Life. Country Life Vitamins have just become certified gluten free. It's a sublingual methylcobalamin B12, which is much better for us to take than cyancobalamin. I take 3000mcg daily, you may want to start out at a smaller dose. It does take a few months sometimes to notice a difference, but it really does help. I have been taking B12 for 3 yrs now, if I stop for a few weeks, I do know the difference. Jarrow brand is an excellant brand too.

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

Celiac.com Sponsor (A8-M):


Nan2N Explorer
Nan2N
Posted
  • Author
I get my B12 from www.Lame Advertisement.com . It's called Biochem Superior B12, made by Country Life. Country Life Vitamins have just become certified gluten free. It's a sublingual methylcobalamin B12, which is much better for us to take than cyancobalamin. I take 3000mcg daily, you may want to start out at a smaller dose. It does take a few months sometimes to notice a difference, but it really does help. I have been taking B12 for 3 yrs now, if I stop for a few weeks, I do know the difference. Jarrow brand is an excellant brand too.

Thanks for the info! How do you know how much to take? Did you have a blood test to determine if you needed it? I'm still waiting for my results.

MyMississippi Enthusiast
MyMississippi
Posted

Nan,

Don't worry about all your questions to your doctor. Doesn't matter if he "gets sick of you"--- Just keep at it until you get the answers you need. Often time, "The squeaky wheel gets the grease"---

So keep squeaking--- :)

darlindeb25 Collaborator
darlindeb25
Posted

Well, I wasn't getting the answers I needed from the doctors. I didn't know I needed to ask for a B12 blood draw specifically, I thought the doctors would know to do that without my asking. I mean, geez, here I am celiac, with complaints of neuropathy. They are doing nerve conduction tests, I had already been diagnosed with carpal tunnel 8 yrs before--I would have thought they would have known to check my B12 level. Now that I know what I know about B12, to me, it seems they would have checked it first. They never checked my levels. After researching and researching about neuropathy, I found so much info about B12, I decided to try it myself. I started out with 1000mcg of B12, and have gradually built up to 3000mcg. The first time my doctor decided to test my B12 level, it came back at 1237, and I was taking 1000mcg. I was told that my 1237 level was reflecting the amount of what I was taking and that from that point on, my level will always reflect the amount I take. At 1237, my doctor told me not to worry about my B12, he didn't freak out that it was too high, like some doctors seem too, but he dismissed me as having a B12 problem.

My neurologist tells me to keep taking B12, as long as I feel it works, keep taking it. I know it does, so I will.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,049
    • Most Online (within 30 mins)
      7,748
    Penny Puckett
    Newest Member
    Penny Puckett
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • tiffanygosci
      Celiac support is hard to find

      By tiffanygosci · Posted

      Hi Cristiana! It's so nice to meet you! Thank you for the kind reply I am glad I live in a time where you can connect with others through the Internet. That is a mercy I am grateful for.
    • knitty kitty
      Positive biopsy

      By knitty kitty · Posted

      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Fruits & Veggies

      By knitty kitty · Posted

      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      Positive biopsy

      By knitty kitty · Posted

      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Positive biopsy

      By trents · Posted

      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
×
×
  • 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.