Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Neuro Symptoms?

Carolann444

Recommended Posts

Carolann444 Rookie
Carolann444
Posted

Is there anyone here who has neurological symptoms when eating gluten? 

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted

Is there anyone here who has neurological symptoms when eating gluten? 

Yes. without hesitation :rolleyes:

 

Now, let's break it down. What is your issue, or how can we help?  :)

secondTUEsday Newbie
secondTUEsday
Posted

I have just started eating gluten free (today is my 5th day) and for the past year or so I have had some neurological symptoms that I didn't think anything of until I began to realize that all of my random aches/pains/tingles may have something to do with each other! For me the symptoms are tingling (head/skull, hands, feet), vision migraines, and foggy head.  

powerofpositivethinking Community Regular
powerofpositivethinking
Posted

yep I had brain fog.  I can't count how many times I said, "Physically I'm here, but I feel out of it mentally."  It was like an out of body experience feeling.  the fog has lifted going gluten-free!

Is there anyone here who has neurological symptoms when eating gluten? 

Carolann444 Rookie
Carolann444
Posted
  • Author

Yes, I can relate to all of that!   Ataxia fully describes what I go through.  I can't walk or move my arms without an extreme amount of concentration.  I'm dizzy, foggy headed, can't think straight and get confused.  Alot of times a reaction starts with tingling, either feet and legs or lips and face.  Then I notice I am dropping things and running into things.  Then it progresses to where I can't walk.  I have slurred speech and it is difficul,t if I can get anything out, for anyone to understand me.  Then my vision, my eyes cross sometimes so bad that it hurts. My husband says he can always tell when I start having a reaction from my eyes.  They look "freaky" as he calls it and they dilate. Once the reaction is full blown, all I can do is lay down and wait for it to pass.  Usually I can start to somewhat function after a couple of hours but the full effects can last for a few days.  I must be a very sensitive celiac because if I eat out and they don't cook it separately, different utensils, etc, then I will have a reaction.  Anyone else have that many symptoms?  I didn't used to get the neurological symptoms until about 1 1/2 years ago, (I have been sick for the past 6 years and just recently got diagnosed with celiac) and they did all kinds of testing in the hospital to make sure everything was okay neurological and it was.  I also get bad abdominal pains.  I have all of these same reactions when I eat dairy too, so I am now gluten and dairy free. 

Archived

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

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


  • Member Statistics

    • Total Members
      128,390
    • Most Online (within 30 mins)
      7,748
    Ozz lock
    Newest Member
    Ozz lock
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.9k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Negative biopsy and seeking doctor recs in Los Angeles

      By trents · Posted

      If you have been eating the gluten equivalent of 4-6 slices of wheat bread daily for say, 4 weeks, I think a repeat blood test would be valid.
    • englishbunny
      Negative biopsy and seeking doctor recs in Los Angeles

      By englishbunny · Posted

      it did include Total Immunoglobin A which was 135, and said to be in normal range. when i did the blood test in January I would say I was on a "light' gluten diet, but def not gluten free.  I didn't have any clue about the celiac thing then.  Since then I have been eating a tonne of gluten for the purpose of the endoscopy....so I'm debating just getting my blood test redone right away to see if it has changed so I'm not waiting another month...
    • trents
      Negative biopsy and seeking doctor recs in Los Angeles

      By trents · Posted

      Welcome to the forum, @englishbunny! Did your celiac panel include a test for "Total IGA"? That is a test for IGA deficiency. If you are IGA deficient, other IGA test resultls will likely be falsely low. Were you by any chance already practicing a reduced gluten free diet when the blood draw was done?
    • englishbunny
      Negative biopsy and seeking doctor recs in Los Angeles

      By englishbunny · Posted

      I'm upset & confused and really need help finding a new gastro who specializes in celiac in California.  Also will welcome any insights on my results. I tested with an isolated positive for deamidated IGA a few months ago (it was 124.3, all other values on celiac panel <1.0), I also have low ferritin and Hashimotos. Mild gastro symptoms which don't seem to get significantly worse with gluten but I can't really tell... my main issues being extreme fatigue and joint pain. The celiac panel was done by my endocrinologist to try and get to the bottom of my fatigue and I was shocked to have a positive result. Just got negative biposy result from endoscopy. Doctor only took two biopsies from small intestine (from an area that appeared red), and both are normal. Problem is his Physician's Assistant can't give me an answer whether I have celiac or not, or what possible reason I might have for having positive antibodies if I don't have it. She wants me to retest bloods in a month and says in the meantime to either "eat gluten or not, it's up to you, but your bloodwork won't be accurate if you don't" I asked if it could be I have early stage celiac so the damage is patchy and missed by only having two samples taken, and she said doctor would've seen damaged areas when performing endoscopy (?) and that it's a good sign if my whole intestine isn't damaged all over, so even if there is spotty damage I am fine.  This doesn't exactly seem satisfactory, and seems to be contrary to so much of the reading and research I have done. I haven't seen the doctor except at my endoscopy, and he was pretty arrogant and didn't take much time to talk. I can't see him or even talk to him for another month. I'm really confused about what I should do. I don't want to just "wait and see" if I have celiac and do real damage in the meantime. Because I know celiac is more that just 'not eating bread' and if I am going to make such a huge lifestyle adjustment I need an actual diagnosis. So in summary I want to find another doctor in CA, preferably Los Angeles but I don't care at this stage if they can do telehealth! I just need some real answers from someone who doesn't talk in riddles. So recommendations would be highly welcomed. I have Blue Shield CA insurance, loads of gastros in LA don’t take insurance at all 😣
    • trents
      Oats gluten free?

      By trents · Posted

      Okay, Lori, we can agree on the term "gluten-like". My concern here is that you and other celiacs who do experience celiac reactions to other grains besides wheat, barley and rye are trying to make this normative for the whole celiac community when it isn't. And using the term "gluten" to refer to these other grain proteins is going to be confusing to new celiacs trying to figure out what grains they actually do need to avoid and which they don't. Your experience is not normative so please don't proselytize as if it were.
×
×
  • Create New...