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

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:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to barb simkin's topic in Related Issues & Disorders
      8

      celiac, chocolate and alcohol

    2. - barb simkin replied to barb simkin's topic in Related Issues & Disorders
      8

      celiac, chocolate and alcohol

    3. - trents replied to barb simkin's topic in Related Issues & Disorders
      8

      celiac, chocolate and alcohol

    4. - barb simkin replied to barb simkin's topic in Related Issues & Disorders
      8

      celiac, chocolate and alcohol


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,336
    • Most Online (within 30 mins)
      7,748

    DME
    Newest Member
    DME
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      So, you had both and endoscopy with biopsy and a colonoscopy. That helps me understand what you were trying to communicate. No, no! It never occurred to me that you were trying to mislead me. It's just that we get a lot of posters on the forum who are misinformed about what celiac disease is and how it is diagnosed so I need some clarification from you which you were so gracious to give.
    • barb simkin
      I had both the genetic genes for celiac.  My gastroenologist advised he also took a biopsy during one of my colonoscopies and endoscopy and advised I had celiac disease, along with stomach ulcers from my esophagus stomach down to my small bowel. I was shown the ulcers on the catscan and endoscopy report.  I also had polyps in 3 places throughout my large bowel. I was on a strict diet for months following.  I am sorry if I didnt define how I was diagnosed with celiac disease.  I am sorry if you think I was misleading you. I also had to pay $150.00 for the genetic testing.
    • trents
      So, I'm a little confused here. I understand you to say that you have not been officially diagnosed with celiac disease. Is this correct?  You have had genetic testing done to check for the potential for developing celiac disease and that was positive. Is this correct? I think you meant to type "gluten sensitivity" but you typed "gluten insensitivity". Just so we are clear about the terminology, there is celiac disease and there is NCGS (Non Celiac Gluten Sensitivity). They are not the same but they have overlapping symptoms. Celiac disease causes damage to the small bowel lining but NCGS does not. NCGS is often referred to in short form as gluten sensitivity. However, people often use the terms celiac disease and gluten sensitivity interchangeably so it can be unclear which disease they are referring to. Genetic testing cannot be used to diagnose celiac disease but it can be used to establish the potential to develop active celiac disease. About 40% of the general population has one or both of  the genes that have been most strongly connected with the potential to develop active celiac disease but only about 1% of the population actually develops active celiac disease. This makes the genetic test useful for ruling out celiac disease but not for diagnosing it. A colonoscopy cannot be used to diagnose celiac disease because it doesn't permit the scope to go up into the small bowel where celiac disease does the damage. They use an endoscopy ("upper GI) for checking the small bowel lining for celiac damage.
    • barb simkin
      I did nor read the chocolate pkg as it was of fered to me and I ate 2 pcs. I do know that only very dark chocolate and and a very few others are gluten free. Most alcohols contain gluten. I have several yrs of not knowing my celiac condition as docs would not do the test. After looking on the internet about my sufferings I insisted on the gene trsting which showed positive for gluten insensitivity and a biopsy on my next colonoscopy that also showed positive which could not help the damage done to my small bowel. So I very rarely have a glass of wine
    • trents
      @barb simkin, are you sure the chocolate products are gluten-free and not "manufactured on equipment that also handles wheat products and tree nuts", i.e., cross-contamination? And what kind of alcoholic beverages are we talking about? Most beers are made from gluten-containing grains. Just checking.
×
×
  • Create New...