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

Gluten ataxia: Wondering if I have it?

lrlazarov

Recommended Posts

lrlazarov Newbie
lrlazarov
Posted

Hello, everybody!

It's my first post here on the forum. :) I'm 25 year old and I leave in Bulgaria, Europe. I've been gluten free for the last 5 years. Initially when I started my gluten-free journey I didn't have ataxia symptoms but I wasn't very careful then and I often got glutened. Then the ataxia showed up gradually. Now I have slight unsteadiness almost all of the time and when I get accidentally glutened my symptoms get worse. I wanted to share my experience and hear about your experience too so that I get a better understanding if it's really ataxia or it's something else. Here are some of my questions:

  • How quickly does the ataxia symptoms return after you get glutened (mine come in a matter of minutes, if not seconds - and I am curious if that's even possible or my mind is playing tricks with me)?
  • Is the ataxia the first symptom to show after a reaction (even before the abdominal cramps, etc.)? Or they are the last to show up for you (or they don't show up at all because you've healed, etc.)?
  • After going gluten free did the ataxia completely resolved or it's still there but just less noticeable?

...And I can probably ask you a lot more things but that's a good start :) Any comments are welcome and appreciated because I've been fighting this battle on my own for years now – no one in my country is even aware of things like non-celiac gluten intolerance, gluten ataxia, etc.

I should also point out that for the last 3 years I've been eating only WHOLE, REAL foods and nothing else. I am really careful about cross-contamination. So I feel like I am doing my absolute best to avoid all gluten but the unsteady feeling and lack of balance is still there. It's not like I am falling or anything, but it's very disturbing and sometimes scary – and most importantly it stops me from fulfilling my full potential and going after my dreams.

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted
24 minutes ago, lrlazarov said:

Hello, everybody!

It's my first post here on the forum. :) I'm 25 year old and I leave in Bulgaria, Europe. I've been gluten free for the last 5 years. Initially when I started my gluten-free journey I didn't have ataxia symptoms but I wasn't very careful then and I often got glutened. Then the ataxia showed up gradually. Now I have slight unsteadiness almost all of the time and when I get accidentally glutened my symptoms get worse. I wanted to share my experience and hear about your experience too so that I get a better understanding if it's really ataxia or it's something else. Here are some of my questions:

  • How quickly does the ataxia symptoms return after you get glutened (mine come in a matter of minutes, if not seconds - and I am curious if that's even possible or my mind is playing tricks with me)?
  • Is the ataxia the first symptom to show after a reaction (even before the abdominal cramps, etc.)? Or they are the last to show up for you (or they don't show up at all because you've healed, etc.)?
  • After going gluten free did the ataxia completely resolved or it's still there but just less noticeable?

...And I can probably ask you a lot more things but that's a good start :) Any comments are welcome and appreciated because I've been fighting this battle on my own for years now – no one in my country is even aware of things like non-celiac gluten intolerance, gluten ataxia, etc.

I should also point out that for the last 3 years I've been eating only WHOLE, REAL foods and nothing else. I am really careful about cross-contamination. So I feel like I am doing my absolute best to avoid all gluten but the unsteady feeling and lack of balance is still there. It's not like I am falling or anything, but it's very disturbing and sometimes scary – and most importantly it stops me from fulfilling my full potential and going after my dreams.

Have you been to a doctor about this?  This seems serious and may have nothing to do with gluten. Don’t mention gluten, just tell the doctors what is happening

Ennis-TX Grand Master
Ennis-TX
Posted

My ataxia hits before the cramps, vomiting, or anything else, it will appear mildly with even supposedly gluten-free foods that are contaminated. Mild and slight exposure will cause me to get numbness in the hands, drop stuff like crazy, and not notice when stuff is hot. Last major straight up gluten food back in 2016 from eating out caused to complete motor control and collapse. Then the vomiting hit while I was unable to move on the floor.....

Now one thing that concerns me if you mention a whole foods only diet. Take it a varied diet and well balanced nutrient wise? Another limitation other then celaic that might cause a nutrient deficiency? This makes me think you should get a full panel done on your nutrients and see if their might be other issues.
A B-vitamin complex like Liquid Health Neurological Support and their Stress & Energy formula would be a big help, 1 tbsp each 3 times a day see about finding it on amazon.

One other thing that comes to mind is your glucose, get a monitor and test your blood when you feel "off" see if it might related to it. Diabetes goes hand in hand with celiac often, and this way you can get a idea if the issues are glucose related
It could also be thyroid, hormone, or chemical imbalance issues.

As to how long it last, the initial motor loss ends in 2-12 hours for me, dropping stuff in coordination will restore mostly in the next 24 while the numbness and temperature issues will last over a week. But I had it before going gluten free, so I also got some brain damage and according to the chiropractor some spine damage that might be related. My immune system was attacking my brain and nervous system. It was crazy the brain issues it used to cause with extreme brain fog and loopy thoughts that drove me mad.

lrlazarov Newbie
lrlazarov
Posted
  • Author
2 hours ago, kareng said:

Have you been to a doctor about this?  This seems serious and may have nothing to do with gluten. Don’t mention gluten, just tell the doctors what is happening

Yes, I've been to many doctors through the years - gastroenterologist, neurologists, etc. and it's been all the same - "you're fine boy, it's all in your head". I've had MRI scans and all kinds of other tests. And I am pretty sure I cannot make this up. Now I am working with a gluten specialist from the UK. She thinks the ataxia might also be due to nutritional deficiencies (B12, Vit E, magnesium, etc.) and I am working on fixing those now.

ch88 Collaborator
ch88
Posted
5 hours ago, lrlazarov said:
  • How quickly does the ataxia symptoms return after you get glutened (mine come in a matter of minutes, if not seconds - and I am curious if that's even possible or my mind is playing tricks with me)?
  • Is the ataxia the first symptom to show after a reaction (even before the abdominal cramps, etc.)? Or they are the last to show up for you (or they don't show up at all because you've healed, etc.)?
  • After going gluten free did the ataxia completely resolved or it's still there but just less noticeable?
  • I never had ataxia but I did have confusion before I went gluten free. I feel very anxious within about 2 minutes of eating gluten. Before I went gluten free I was extremely paranoid about certain things but not other things. I could barely understand social interactions before I went gluten free. 
  • The anxiety comes back within a couple minutes. Other symptoms (like extreme hyperfocus) take a day or two before they come back. They last for about a week and then all of them go away.
  •  My symptoms cleared up about 90 to 95 percent.  The differences that I still have are very minor in comparison but some are still there. Fortunately I don't have the emotional problems that I had before.

I have been recovering in steps. Going gluten free helped and there were extreme changes the (things looked and sounded way different to me after I went gluten free) that happened suddenly. Others slowly went away over about a year. Eliminating cross contamination, and avoiding oats helped tons. Also I think if I avoid corn, milk, alchohol take L-glutamine powder, and a complete multivitamin/multi mineral tablet every day I feel best. 

I don't know if I have celiac disease, NCGS, and/or a wheat allergy. 

Open Original Shared Link

Archived

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

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


  • Member Statistics

    • Total Members
      126,204
    • Most Online (within 30 mins)
      7,748
    DreDre
    Newest Member
    DreDre
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.2k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • kopiq
      starting to heal, vitamin d deficiant but cannot tolerate vitamins. what to do? also multiple ongoing issues.

      By kopiq · Posted

      I also have food particles left on toiet paper when i wipe and my stool is light yellow not absorbing fats. I urinate about 15 times a day and have very sticky snot,dry throat.
    • kopiq
      starting to heal, vitamin d deficiant but cannot tolerate vitamins. what to do? also multiple ongoing issues.

      By kopiq · Posted

      Hi all, I was diagnosed by blood work about 2 months ago and have since went on a strict gluten free diet. I have an endoscopy in January and the GI dr said nothing about staying on gluten for it; hes aware i went no gluten. starting to heal symptoms include: (this is huge) sensation coming back to genitals and when having a bowl movement. everything has been numb for a long time down there including lower belly button area. good size (not abnormal) bowel movements once a day or every two days. small dot size wart just fell off my finger that was there for years. have not broke out with a cold sore this winter (every winter prior for years i would develop a cold sore on my lip) Ongoing issues I don't sweat. not from my hands, or armpits or feet. I do not get butterflys in stomach. my hands have been so dry for years ive been using a crack cream as they crack and bleed very severely in the fall and winter.  (since going gluten free ive not used crack cream but they are still very very dry and chapped/flaky, no sweat or moisture in palms of hands at all. I dont crave food. i have no cravings at all, not for pizza, ice cream , nothing. my cravings are dead. smell of foods kinda make me hungry, but my stomach blocks it. pins needles in feet get weak legs standing up from sitting and dizzy, things almost turn black. i cannot tolerate veggies or vitamins. Iam vitamin D deficient according to my Dr and Ive tried vitamin D pills. they give me a massive migraine for 8 hours and upset my stomach. the heat from the direct sun make me extremely tired to the point of wanting to pass out. again i don't sweat. broccoli gives me a migraine headache as well. mushrooms, bell peppers burn my stomach. fruits burn my stomach, fats (peanut butter, any oil or fat from meats make me sick to my stomach for a couple hours or longer. salt and pepper burns my stomach. all these issues cause pain at my belly button area and expand to the rest of my upper stomach and sides the more i ingest through out the day. I currently eat bland basmati rice, chicken, pork chops (fat trim), boiled russet potatoes no skin for three meals a day. my snacks are gluten free ground buckwheat flour pancakes. (just water, no oil , salt, dairy.) how am i to get vitamins in my system if i cannot tolerate them in my stomach? i mentioned epidermal vitamin patchs but dr said no. why cant i stand the heat from the sun ? why cant i sweat? thanks for any info.                
    • trents
      Celiac Maybe a Possibility?

      By trents · Posted

      Because you have significantly reduced your gluten intake over a considerable amount of time, it is likely that you will test negative on the antibody tests. However, if the $112 for the Quest test is not a burden, it wouldn't hurt to try. It tests for total IGA (to ascertain if you are IGA deficient) and tTG-IGA. If total IGA is deficient, it can result in false negatives in other IGA tests. The tTG-IGA is the single most popular test ordered by physicians. The Quest test is not a complete celiac panel by any means (refer to the linked article above) but it might be a good place to start. Personally, I think you know enough to conclude that you need to get serious about avoiding gluten, whether you have celiac disease or NCGS. Human nature being what it is, however, many people seem to need an official diagnosis of celiac disease in order to stay on the bandwagon. Otherwise, they seem to rationalize cheating on the gluten-free diet. And there is this misconception out there that NCGS is inconvenient and uncomfortable but not harmful so it's okay to cheat. The more we learn about gluten-related disorders the more they seem to not fit into our neat little black and white categories. By the way, celiac disease is not a food allergy. It is classified as an autoimmune disorder.
    • More2Learn
      Celiac Maybe a Possibility?

      By More2Learn · Posted

      These responses are all extremely helpful, ty.  Really good reminder about omega 6.  I also know I'm low in zinc; I took the zinc test where I drank it on a spoon and couldn't taste it.  To that end, I try to eat a lot of oysters.  I do think it would be a good idea to get the blood test.  Two questions: 1-  Is there any reason you wouldn't recommend that I just buy and take a test like this as a first step? 2- I've been somewhat gluten free since ~Jan 2023 (technically organic, gluten free, soy free, light on dairy).  I eat a lot of meat, vegetables, rice -- a common breakfast for me is three eggs and a sausage link, and I can't remember the last time I had a sandwich or bread.  However, because in my mind I didn't think I had an allergy, and I more was doing gluten free to avoid artificially iron-enriched foods, I do make exceptions.  I'll eat breaded calamari.  When my Dad visits, I split mozzarella sticks with him because he loves them so much.  I'll eat the "gluten sensitive" items at a restaurant and if they asked, "is cross contamination ok?",  I always said yes.  Based on that, since I never probably fully eliminated gluten, but it was significantly reduced... is that good enough to take the blood test?  Because the pain in my side gets SO bad (really sometimes I can't function, and I absolutely thought I was dying), I am hesitant to do the gluten challenge.  Would it make sense to take the test, and if it's negative, then consider doing the challenge and seeing if I can deal with eating the bread every day? Thanks again!
    • Yaya
      Muscle Twitching

      By Yaya · Posted

      For me, with osteoporosis, Celiac and more than 1 heart condition, the slower, safer route is preferable.  I'm on 5 meds per day.  Too much of anything can disturb absorption of this or that. Have a Happy Thanksgiving.  I'm gone for a few days.  
×
×
  • Create New...