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

Gluten Ataxia


UnhappyCoeliac

Recommended Posts

UnhappyCoeliac Enthusiast

I don't have ataxia, but I fear I have had symptoms of it 2-3 times while not being gluten free. I am now gluten three heh two days (longest so far)

And im simply worrying if I had mild ataxia or gluten ataxia was ever going to come it back will it simply go away now?

Hope someone can help this really scared the hell out of me into going gluten free.


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



Celiac.com Sponsor (A8-M):



GFinDC Veteran
I don't have ataxia, but I fear I have had symptoms of it 2-3 times while not being gluten free. I am now gluten three heh two days (longest so far)

And im simply worrying if I had mild ataxia or gluten ataxia was ever going to come it back will it simply go away now?

Hope someone can help this really scared the hell out of me into going gluten free.

Open Original Shared Link

Good for you going gluten-free! It is not as hard as it seems at first. Just takes a while to learn the ropes as they say.

If you can stay off the gluten the antibodies should diminish over time. So your symptoms may not go away but they wouldn't in theory get worse either. That is if they are caused by gluten in the first place.

UnhappyCoeliac Enthusiast

Ive read that article perhaps I am being paranoid I am not sure 3 days gluten free now

ang1e0251 Contributor

So why is it you don't want to be gluten-free?

GFinDC Veteran
Ive read that article perhaps I am being paranoid I am not sure 3 days gluten free now

Well, that is not a bad thing! At the beginning of the diet there are lots of things to learn, and lots of unknowns. Is this food safe? Is that ingredient safe? Is this food cross contaminated? You can't usually tell just by looking at the food. Being "paranoid" about the food is not a bad thing if it helps you learn. IF you are having symptoms of gluten ataxia then it probably will help a lot to be strictly gluten-free. It is not an instant cure of course, it takes time for things to improve and to find an eating plan that works for your body. Simple foods made at home with minimal spices are a good idea to start out. And some B and D supplements might help after you confirm they are gluten-free. Extra fiber might be helpful also. Pysillium husks work well for me. And oats but some people have problems with oats.

UnhappyCoeliac Enthusiast

thanks gluten-free

Over the week I was away and had a heavy social schedule with friends I expected neuro symptoms simply because they pop up when sleep depraved but I got none was very happy

My total hours of sleep in three days was 6 hrs and had no balance issues. I was boating, drinking, and pushing boats on to trailers, swimming canoeing fairly active

Basically if my body decided to go retarded and make me lose my balance i would have been screwed but thank god nothing happen. I can only put the no symptoms too down to being gluten free

GFinDC Veteran

Sounds like a fun time on the water UnhappyC!

I had sinus infections on and off for years before going gluten-free, and often had loss of balance. Most of that cleared up for me after I had been gluten-free a while and learned how to avoid the stuff. I had another round of losing balance recently but it was due to high blood pressure meds HCTZ (hydroclorathiazide) I was taking. Stopped that stuff and now I am doing better again. HCTZ tends to throw your potassium levels off and that can cause lots of different symptoms.

I have problems sleeping if I eat dairy. It really charges me up and I can't get to sleep. They say the dairy protein casein is similar to the gluten proteins. So there may be a possibility of a cross reaction. Sometimes autism patients are put on diets restricting gluten and dairy. They also say the gluten and casein proteins can cross the brain membrane and cause opioid like reactions. So some people think that can cause the withdrawal type feelings that some people experience when going gluten-free.

You might want to read up on DPP-IV supplements. They may help you some with gluten and casein digestion.


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.

  • 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. - catnapt posted a topic in Related Issues & Disorders
      0

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

    2. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

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

    3. - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      Curious question

    4. - Amy Barnett posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Question

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,322
    • 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

    • catnapt
      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
      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.    
    • Jmartes71
      So I've been dealing with chasing the name celiac because of my body actively dealing with health issues related to celiac though not eating. Diagnosed in 1994 before foods eliminated from diet. After 25 years with former pcp I googled celiac specialist and she wasn't because of what ive been through. I wanted my results to be sent to my pcp but nothing was sent.I have email copies.I did one zoom call with np with team member from celiac specialist in Nov 2025 and she asked me why I wanted to know why I wanted the celiac diagnosis so bad, I sad I don't, its my life and I need revalidaion because its affecting me.KB stated well it shows you are.I asked then why am I going through all this.I was labeled unruly. Its been a celiac circus and medical has caused anxiety and depression no fault to my own other than being born with bad genetics. How is it legal for medical professionals to gaslight patients that are with an ailment coming for help to be downplayed? KB put in my records that she personally spent 120min with me and I think the zoom call was discussing celiac 80 min ONE ZOOM call.SHE is responsible for not explaining to my pcp about celiac disease am I right?
    • Amy Barnett
      What is the best liquid multivitamin for celiac disease?
    • Jmartes71
      I've noticed with my age and menopause my smell for bread gives me severe migraines and I know this.Its alarming that there are all these fabulous bakeries, sandwich places pizza places popping up in confined areas.Just the other day I suffered a migraine after I got done with my mri when a guy with a brown paper bag walk in front of me and I smelled that fresh dough bread with tuna, I got a migraine when we got home.I hate im that sensitive. Its alarming these places are popping up in airports as well.I just saw on the news that the airport ( can't remember which  one)was going to have a fabulous smelling bakery. Not for sensitive celiacs, this can alter their health during their travel which isn't safe. More awareness really NEEDS to be promoted, so much more than just a food consumption!FYI I did write to Stanislaus to let them know my thoughts on the medical field not knowing much about celiac and how it affects one.I also did message my gi the 3 specialist names that was given on previous post on questions on celiac. I pray its not on deaf door.
×
×
  • 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.