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 Problems?

ellora

By ellora
in Related Issues & Disorders

Recommended Posts

ellora Newbie
ellora
Posted

hi i need to chat to someone as doctors in the uk dont listen and havent got a clue. iv got coeliac and DH, my mums also has coeliac and just been diagnosed with MS. I never realised the neurological effects coeliac could have and i have been having problems with my thought patters and things and i was wondering if anyone knows anything. I know theres links with depression but my doctor says not. even though my mum sufffers from depression also. i was an A student at school and as i got older i started to struggle with concentration and its got worse i feel like my mind is slipping away from me. i forget things (i reask questions over again minuits after iv been given the answer and walk out of the house with my cups in hand ect.)and have always been so clumsy that all my teachers and family ect. usd to comment on it. my first word was celetape <(eg. iv just spent half an hour trying to remember how to spell it and cant). im wondering if i have a coordination problem as people also comment on the way i walk. some even say i have a slight limp or dragging of the leg. iv gotton so bad somedays i cant talk and i stop in the middle of things and dont know what im doing. iv heard of legions on the brain with coeliac but i dont know if its related. i have insomnia and really bad dreams when i do sleep. iv always been good at hard work but i was in my last job for seven weeks before i broke down as it was too much. just a shop job but on my last day before i decided to leave i made so many mistakes and i was shaking and felt like my head was exsploding. i dont feel my olds self. i know theres something wrong. i think to everyone else this sounds stupid but to me its scary and i think a doctor will think im mad. thing is though i started a degree four years ago getting top marks and took a years out when i went down hill thinking id get better with rest and didnt and in the end i ended up barely passing. im sorry for the essay i just need help. :(

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

Celiac.com Sponsor (A8-M):


teemaree Apprentice
teemaree
Posted
hi i need to chat to someone as doctors in the uk dont listen and havent got a clue. iv got coeliac and DH, my mums also has coeliac and just been diagnosed with MS. I never realised the neurological effects coeliac could have and i have been having problems with my thought patters and things and i was wondering if anyone knows anything. I know theres links with depression but my doctor says not. even though my mum sufffers from depression also. i was an A student at school and as i got older i started to struggle with concentration and its got worse i feel like my mind is slipping away from me. i forget things (i reask questions over again minuits after iv been given the answer and walk out of the house with my cups in hand ect.)and have always been so clumsy that all my teachers and family ect. usd to comment on it. my first word was celetape <(eg. iv just spent half an hour trying to remember how to spell it and cant). im wondering if i have a coordination problem as people also comment on the way i walk. some even say i have a slight limp or dragging of the leg. iv gotton so bad somedays i cant talk and i stop in the middle of things and dont know what im doing. iv heard of legions on the brain with coeliac but i dont know if its related. i have insomnia and really bad dreams when i do sleep. iv always been good at hard work but i was in my last job for seven weeks before i broke down as it was too much. just a shop job but on my last day before i decided to leave i made so many mistakes and i was shaking and felt like my head was exsploding. i dont feel my olds self. i know theres something wrong. i think to everyone else this sounds stupid but to me its scary and i think a doctor will think im mad. thing is though i started a degree four years ago getting top marks and took a years out when i went down hill thinking id get better with rest and didnt and in the end i ended up barely passing. im sorry for the essay i just need help. :(

I too would be interested in learning more about this....

It was the servere depression that finaly got the attention of a doctor, who found it very easy to recognise I had celiac...My depression and anxiety were so bad...I couldn't watch the news as it would have me stressing so much and upset. But since going gluten free... I have noticed I am so much better at handling stress. But even just today I had the same experience of bad co-ordination and bad memory blanks at work today... like not remembering simple tasks or remembering the right change to give, and not being able to recall a fellow staff members name... I was trying to dig deep into my memory to pull his name and for the life of me, it wouldn't come to me....

harp1 Apprentice
harp1
Posted

So glad you posted. I've been really shaky for a long time - have essential tremor, and sometimes unsteady on my feet. I've recently started B12 and magnesium shots and everything is improved. My thinking is clearer and memory is improved, as well as my general attitude. I'm not depressed or anxious. WOW. There's so much research about how the brain is effected by celiac, maybe do a search on this forum for more specific details. Good luck :P

ps have you had your thyroid checked? Big part of the picture too.

caek-is-a-lie Explorer
caek-is-a-lie
Posted

Gluten gives me non-epileptic seizures, Narcolepsy with Cataplexy (paralysis), depression, anxiety attacks, foggy brain, memory problems, disrupted sleep, moodiness, etc...

Someone posted a great link to Open Original Shared Link here a little while ago and they describe in more detail what can be going on. They even mention antigliadin antibodies can be found in the cerebral spinal fluid of people with gluten-induced neurological problems, even if they don't have classic Celiac villi atrophy or anything. I thought that was really fascinating. Gluten can so profoundly affect people in different ways and yet it still so misunderstood by the medical community.

lbd Rookie
lbd
Posted

Here is a link to a site listing several articles that you can take to your doctor about neurological manifestations of gluten toxicity:

Open Original Shared Link

For myself, the primary way I respond to gluten is with migraines and brain fog. I teach high school and I thought I was starting to suffer from early Alzheimer's or at least getting old, since I would lose words, forget things, etc. That is all gone now with a gluten free diet! I can't believe how sharp my mind seems again.

Laurie

  • 5 months later...
Pattygallegos Newbie
Pattygallegos
Posted

Hi: I hope I can help you a little I have a 10 year old suffering with the same problems, bad memory, she used to walk on her tippy toes and had coordination problems. It when so far that last year in June she has her first seizure it was so strong that I thought she was going to die.

Lately I have realized that most of her problems are in her diet, she used to love popcorn in very way and form. When we start reading the labels of the food we used to eat we saw that most of it is corn in different colors and shapes, even vitamins have corn.

Since then we are more careful with the food we eat and we all feel so good and happy. Think about it. We are what we eat.

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. trents
      - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    2. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      how much gluten do I need to eat before blood tests?

      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in...
    3. SilkieFairy
      - SilkieFairy posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

      After the birth of my daughter nearly 6 years ago, my stools changed. They became thin if they happened to be solid (which was rare) but most of the time it was Bristol #6 (very loose and 6-8x a day). I was on various medications and put it down to that. A few years later I went on this strict "fruit and meat" diet where I just ate meat, fruit, and squash...
    4. catnapt
      - catnapt posted a topic in Related Issues & Disorders
      0

      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

      learned I had a high PTH level in 2022 suspected to be due to low vit D got my vit D level up a bit but still have high PTH I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption
    5. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      how much gluten do I need to eat before blood tests?

      I am on day 13 of eating gluten and have decided to have the celiac panel done tomorrow instead of Wed. (and instead of extending it a few more weeks) because I am SO incredibly sick. I have almost no appetite and am not able to consume the required daily intake of calcium to try to keep up with the loss of calcium from the high parathyroid hormone...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,323
    • Most Online (within 30 mins)
      7,748
    avery144
    Newest Member
    avery144
    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

      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

      After the birth of my daughter nearly 6 years ago, my stools changed. They became thin if they happened to be solid (which was rare) but most of the time it was Bristol #6 (very loose and 6-8x a day). I was on various medications and put it down to that. A few years later I went on this strict "fruit and meat" diet where I just ate meat, fruit, and squash vegetables. I noticed my stools were suddenly formed, if a bit narrow. I knew then that the diarrhea was probably food related not medication related. I tried following the fodmap diet but honestly it was just too complicated, I just lived with pooping 8x a day and wondering how I'd ever get and keep a job once my children were in school.  This past December I got my yearly bloodwork and my triglycerides were high. I looked into Dr. William Davis (wheat belly author) and he recommended going off wheat and other grains. This is the first time in my life I was reading labels to make sure there was no wheat. Within 2 weeks, not only were my stools formed and firm but I was only pooping twice a day, beautiful formed Bristol #4.  Dr. Davis allows some legumes, so I went ahead and added red lentils and beans. Nervous that the diarrhea would come back if I had IBS-D. Not only did it not come back, it just made my stools even bigger and beautiful. Still formed just with a lot more width and bulk. I've also been eating a lot of plant food like tofu, mushrooms, bell peppers, hummus etc which I thought was the cause of my diarrhea before and still, my stools are formed. In January I ran a genetics test because I knew you had to have the genes for celiac. The report came back with  DQ 2.2 plus other markers that I guess are necessary in order for it to be possible to have celiac. Apparently DQ 2.2 is the "rarer" kind but based on my report it's genetically possible for me to have celiac.  I know the next step is to bring gluten back so I can get testing but I am just not wanting to do that. After suffering with diarrhea for years I can't bring myself to do it right now. So that is where I am!   
    • catnapt
      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

      By catnapt · Posted

      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      I am on day 13 of eating gluten  and have decided to have the celiac panel done tomorrow instead of Wed. (and instead of extending it a few more weeks) because I am SO incredibly sick. I have almost no appetite and am not able to consume the required daily intake of calcium to try to keep up with the loss of calcium from the high parathyroid hormone and/or the renal calcium leak.    I have spent the past 15 years working hard to improve my health. I lost 50lbs, got off handfuls of medications, lowered my cholesterol to enviable levels, and in spite of having end stage osteoarthritis in both knees, with a good diet and keeping active I have NO pain in those joints- til now.  Almost all of my joints hurt now I feel like someone has repeatedly punched me all over my torso- even my ribs hurt- I have nausea, gas, bloating, headache, mood swings, irritability, horrid flatulence (afraid to leave the house or be in any enclosed spaces with other people- the smell would knock them off their feet) I was so sure that I wanted a firm diagnosis but now- I'm asking myself is THIS worth it? esp over the past 2 yrs I have been feeling better and better the more I adjusted my diet to exclude highly refined grains and processed foods. I didn't purposely avoid gluten, but it just happened that not eating gluten has made me feel better.   I don't know what I would have to gain by getting a definitive diagnosis. I think possibly the only advantage to a DX would be that I could insist on gluten-free foods in settings where I am unable to have access to foods of my choice (hospital, rehab, nursing home)  and maybe having a medical reason to see a dietician?   please let me know if it's reasonable to just go back to the way I was eating.  Actually I do plan to buy certified gluten-free oats as that is the only grain I consume (and really like) so there will be some minor tweaks I hope and pray that I heal quickly from any possible damage that may have been done from 13 days of eating gluten.    
×
×
  • 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.