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

Motor Neuron Issues


heidles

Recommended Posts

heidles Newbie

Has anyone experienced motor nerve damage from eating gluten? I was diagnosed with ALS, Lou Gehrigs disease last month. I just got my results back from the lab and have high levels out of range for the Iga. I was wondering if there could be a connection.


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



Celiac.com Sponsor (A8-M):



tiredofdoctors Enthusiast

I am VERY sorry you were diagnosed with ALS. Do you have any family members who have also had this disease? It is absolutely genetic. I would also ask to be re-tested.

I have had cerebellar damage (fairly extensive) from Celiac. In fact, I am a "Neurological Celiac", or sometimes labeled a "silent Celiac" because the ONLY indication that I had with regard to Celiac disease was that I had high levels of Antigliadin antibodies. Unfortunately, once they are that high, the chance that they have begun to destroy the Perkinje cells in the cerebellum is already there. It just depends upon whether your body mistakes a protein found on those cells for gliadin.

Did a neurologist diagnose you with ALS? Did that person perform an extensive neurological evaluation, as well as blood tests? Did he / she take a THOROUGH history, including a "family tree" overview asking whether there are people on either side of your family who have had ALS? If NOT, I would encourage you to seek a highly qualified neurologist in your area. If so, again, I would ask to be re-tested.

Please keep us posted as to the continued medical diagnosis and testing. Also, take care of you.

((((((((((Hugs))))))))))

Lynne

RiceGuy Collaborator

Well, I was having serious motor nerve troubles for quite awhile, until I started taking a sublingual methylcobalamin (vitamin B12) and a magnesium supplement. This combination worked wonders. I only wish I had started them much earlier.

I haven't gone to any doctors for any diagnosis whatsoever, as I lost all trust in docs long ago. I'd have to guess though, from the many posts on this board, that I would have been told I had any number of diseases, but highly unlikely would they have even mentioned Celiac.

Just my two cents...

Welcome to the board! I hope you get all the answers you need.

ravenwoodglass Mentor
Has anyone experienced motor nerve damage from eating gluten? I was diagnosed with ALS, Lou Gehrigs disease last month. I just got my results back from the lab and have high levels out of range for the Iga. I was wondering if there could be a connection.

One way to find out is by trying the diet for a few months, very strictly. I had neuro problems since childhood. Was thought for a bit to have MS. After 6 months gluten-free many of the neuro issues had resolved. After 5 years I still have some residual damage that is permanent but have regained the use of my legs and hands. I still tip over a lot but I think that will always be with me. The gluten free diet will not mask any symptoms from other diseases or syndromes. It wouldn't hurt to give it a try. Make sure you check the gluten statis of any meds though, there are no regulations regarding gluten in meds, does not need to be declared and starches change at the whim of the suppliers so meds are risky, both OTC and script.

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. - YoshiLuckyJackpotWinner888 replied to YoshiLuckyJackpotWinner888's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Water filters are a potential problem for Celiac Disease

    2. - Scott Adams replied to Known1's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Reverse Osmosis (RO) Water

    3. - Scott Adams replied to JoJo0611's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Yeast extract

    4. - Scott Adams replied to dsfraley's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      14

      9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?

    5. - Scott Adams replied to YoshiLuckyJackpotWinner888's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Water filters are a potential problem for Celiac Disease

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

    • Total Members
      133,570
    • Most Online (within 30 mins)
      7,748

    Chanty
    Newest Member
    Chanty
    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

    • YoshiLuckyJackpotWinner888
      What non organic or nonorganic molecules from a plastic bottle of water can trigger a reaction that I have only experienced during an auto immune experience? There really should not be any organic molecules in  such a bottle. I seen a thread where it was mentioned that his refrigerator water filter tested positive for gluten when he had it checked. If I went to physician to get checked for other possible triggers from a water bottle, I don’t think that will go anywhere. Again, distilled water containers cause no reactions. I’m not an industry expert, but something is there.  I don’t think that this is a case of microplastics causing this. Too bad we can’t call upon some third party investigation.  
    • Scott Adams
      It’s understandable to want to be cautious, especially after experiencing symptoms. However, there is currently no scientific evidence that reverse osmosis or standard activated carbon water filters expose people to gluten in amounts that would trigger celiac disease. Gluten is a protein, and if any starch-based binder were used in filter manufacturing, it would not pass through RO membranes or remain in finished bottled water at clinically meaningful levels. Plain water — filtered, RO, or bottled — does not contain gluten unless it is intentionally added (which would require labeling). Steam-distilled water is certainly safe, but it is not considered medically necessary for people with celiac disease. If reactions are occurring, it may be helpful to explore other potential explanations with a healthcare provider rather than assuming filter-related gluten exposure.
    • Scott Adams
      It’s understandable to look for bigger explanations when you’re dealing with complex symptoms, but the current scientific consensus does not support the idea that celiac disease evolved as a defense against Candida. Celiac disease is a well-characterized autoimmune condition triggered specifically by gluten in genetically susceptible individuals (HLA-DQ2 or HLA-DQ8). While some laboratory studies have shown that certain Candida proteins (like Hwp1) share limited sequence similarities with gluten or tissue transglutaminase (tTG), that does not mean Candida causes celiac disease or commonly produces false-positive tTG tests in clinical practice. Anti-tTG IgA remains a highly specific and validated marker for celiac when used appropriately (especially alongside total IgA testing and, when indicated, biopsy). IgG antibodies to Saccharomyces cerevisiae (ASCA) are more commonly associated with Crohn’s disease and are not considered diagnostic for celiac. There is ongoing research into microbiome interactions and immune cross-reactivity, but at this time there is no evidence that yeast exposure from foods triggers celiac autoimmunity in people without gluten exposure. If symptoms persist despite a strict gluten-free diet, it’s best to work with a gastroenterologist to rule out other conditions such as IBD, SIBO, non-celiac food intolerances, or refractory celiac disease rather than assuming a fungal-driven mechanism.
    • Scott Adams
      It sounds like you’ve put a lot of effort into tracking patterns, and that kind of awareness can be helpful. With celiac disease specifically, though, the only confirmed immune trigger is gluten. Reactions to dairy are common after diagnosis because intestinal damage can temporarily reduce lactase, leading to lactose intolerance — but that’s different from casein sensitivity. IgG food panels, including yeast, are generally considered markers of exposure rather than proof of clinical intolerance. Aged cheeses like Irish cheddar are typically gluten-free, though they do contain casein and natural cultures. If symptoms are strong and repeatable, it may be worth working with a gastroenterologist or allergist to sort out true allergies, intolerances, or other GI conditions rather than assuming multiple cross-reactive immune triggers.
    • Scott Adams
      I completely understand wanting to track down every possible source of exposure after a celiac diagnosis, especially when symptoms are distinct and repeatable. That said, there’s currently no credible evidence that bottled water — including filtered water products like Gatorade water — contains gluten from filter materials. Activated carbon filters are typically bound with food-grade binders, and if any starch were used in manufacturing, it would not remain in the finished water at measurable or biologically active levels. Plain water itself does not contain protein, and gluten is a protein. Major beverage companies also have strict allergen control programs, and gluten would need to be declared if intentionally added. If symptoms are occurring consistently after certain products, it may be worth discussing with a physician to explore other potential triggers, but at this time distilled water is not considered medically necessary for people with celiac disease.
×
×
  • 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.