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Motor Neuron Issues


heidles

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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.


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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.

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      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
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