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

BamBam

By BamBam
in Related Issues & Disorders

Recommended Posts

BamBam Community Regular
BamBam
Posted

My family has a genetic familial ataxia, where our hips and legs don't work right, my brother is in a wheelchair - and I am also affected, just not as severe. Anyway, I have read some articles regarding gluten ataxia and wonder if any of you people have any symptoms or know of any other good reports/articles on it. It seems like when I get glutened, and I think I was last night, my legs feel very sluggish and I just have a hard time walking, I trip on my shoes, or over a rug on the floor. But when I am healthy, eating all the right things, my whole body just seems to work better.

BamBam

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

Celiac.com Sponsor (A8-M):


Guest nini
Guest nini
Posted

I think I may have this. I've always been "clutsy" and when I get "glutened" I have a really hard time walking and I trip over my own feet. Hmmm. I've never heard of this before, I'll have to ask my Dr. about it. Do you suppose the 34 years of damage I did to my body consuming gluten is repairable?

fritzicurls Rookie
fritzicurls
Posted

There is an article about gluten ataxia, celiac and yeast infections on the Denver Naturopath Clinic website. Click on news and scroll down until you get to past newletters. The article is in the 2004 list. It is very interesting and well worth reading. Hope this helps. I hate the sense of imbalance and vertigo which have gotten better since I have been gluten-free.

fritzicurls

cdford Contributor
cdford
Posted

After the fatigue and muscle pain of fibromyalgia, this was the next thing to rear its ugly head. I am so in a wheelchair. The longer I go without getting glutened, the better I get. Any contamination and my left side especially does not want to work at all.

Guest nini
Guest nini
Posted

why the left side??? I wonder. My left side has been in excruciating pain. Up and down my leg, my side and my arm and even my neck... yesterday I could hardly walk because of the pain in my leg.

BamBam Community Regular
BamBam
Posted
  • Author

My left side is also the weakest - I ate out Wednesday evening, ordered fish, and after I ate a few bites I noticed a fine film on it, and thought it was probably some kind of breading or something. The next day, I could hardly pick up my feet and I was stumbling on my shoes and just felt crummy, plus had a dose of the good ol stomach nausea and several trips to the bathroom. But I also never thought of it until you mentioned it, but my left side is always the weak side. I too, wonder why that is?

BamBam

cdford Contributor
cdford
Posted

According to my neurologist, it is normal for the left side to be the first to go. Thank God we found the celiac disease and there is hope for getting better.

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

Celiac.com Sponsor (A8-M):


SueC Explorer
SueC
Posted

I too have weakness in my left side. I don't see to have loss of strength or muscle but my left arm and left leg feel weaker and more tired than my right side..... Does anyone know if there is an scientific explanatin for this. I also feel like I have a hot poker sticking into my shoulder blade. Thoughts anyone.......... :(

Sue

  • 1 month later...
emeraldskies Rookie
emeraldskies
Posted

Since I was two years old, I have had ataxia. I have been slamming into everything in my path, stumbling, over- or underreaching, missing altogether, knocking things to the ground, dropping objects, exhibiting a tremor, etc. As a child, I knew I loved science, but I also knew I could never become a neurosurgeon :) because of my shaky hands. If I take a sobriety test, I will always fail, but not because I had been drinking. I can't walk in a straight line, my body weaves from side-to-side, and I can't touch my finger to my nose without missing a bunch of times first. I also have dysarthria, which in my case means that my voice is very quiet and tends to blend in with other noises in the environment, so it is hard to understand. My handwriting has deteriorated to the point where it looks like it was written by an elderly person. My muscles are weak, and my reflexes have been slow or absent. I have always tried to blow it off, and people have thought I was just slightly clumsy, but my husband knows the truth I need special help getting up and down the stairs, walking across ice, approaching a new environment, etc. I also do have to explain the tremor--most think I am a nervous person if I don't elaborate. Hopefully, I have gluten ataxia and not Friedrich's ataxia because gluten ataxia can have some reversal, and Friedrich's ataxia is degenerative. I don't remember my left side being weaker than the right, other than that I am slightly right-side dominant.

Here are some technical studies about ataxia and celiac disease (in the first link, the main gene associated with gluten ataxia is mentioned, and in the second link, there are brain scans showing cerebellar atrophy):

Open Original Shared Link

Open Original Shared Link

This is a less technical description that is easier to understand:

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
      131,899
    • Most Online (within 30 mins)
      7,748
    dcarter1682
    Newest Member
    dcarter1682
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Patiently Waiting to See Results

      By trents · Posted

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • 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.