Gluten Ataxia and Neuropathy

[Dawn R.]

Is anyone suffering from Celiacs Ataxia and Neuropathy.  I've been dealing with this issue for 3 years. I have been to 3 Neurologists..none of which tested for Celiacs. MRI's, MS Blood work, Skin BX, Spinal Tap and a referral to the Mayo clinic.  It wasn't until I went to see a Functional Medicine Dr. It was the first thing he ordered, Specialized blood and sputum work up. Only then did I receive a diagnosis.  Never had a issue abdominally just neurologically. Anyone else?

[trents]

Welcome to the forum community, @Dawn R.!

Let me assure you! Many on this forum have posted about experiencing gluten ataxia and neuropathy. These are now well-known symptoms of celiac disease and also NCGS (Non Celiac Gluten Sensitivity) among those in the know. Unfortunately, it is not yet general well known in the medical community as a whole.

But may I ask, what specific tests did the neuropathic physician order in so as to arrive at a diagnosis of celiac disease? Can you be more specific and can you share the results along with reference ranges for negative vs. positive. Some celiacs do not experience GI symptoms. We call them "silent" celiacs. That doesn't mean damage isn't being done to the small bowel villous lining, however, which, if allowed to progress will eventually produce GI symptoms. There are specific blood antibody tests that are used to diagnose celiac disease and if they are positive, there is usually and endoscopy with biopsy of the small bowel lining for confirmation. So, do you have access to the test data? 

[Scott Adams]

The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs.

Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.

 

 

 

[knitty kitty]

On 5/1/2024 at 5:28 PM, Dawn R. said:

Is anyone suffering from Celiacs Ataxia and Neuropathy.  I've been dealing with this issue for 3 years. I have been to 3 Neurologists..none of which tested for Celiacs. MRI's, MS Blood work, Skin BX, Spinal Tap and a referral to the Mayo clinic.  It wasn't until I went to see a Functional Medicine Dr. It was the first thing he ordered, Specialized blood and sputum work up. Only then did I receive a diagnosis.  Never had a issue abdominally just neurologically. Anyone else?

Welcome to the forum!

I've suffered with severe Ataxia and Neuropathy.  

Some people with Celiac produce antibodies that attack the nervous system.  These are tTg 6 IgA antibodies.  The usual blood test for Celiac measures tTg 2 IgA antibodies.  

Even if you don't have overt digestive symptoms, Celiac can cause malabsorption of nutrients.  Deficiencies in several vitamins and minerals can contribute to neuropathy.  The B Complex vitamins, especially Cobalamine B12, Thiamine B1, Pyridoxine B6, Vitamin D, and Niacin B 3 can contribute to neuropathy.  Minerals like magnesium, iron, and calcium also contribute to neuropathy.  

Since blood tests are not an accurate measurement of nutritional deficiencies, supplementing with vitamins and minerals is beneficial after diagnosis.  

Keep us posted on your progress!