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Anna Lyndal

Celiac and Neuropathy

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I have been recently diagnosed with celiac disease. I have looked at people's stories all over the internet but haven't seen people with a similar experience to me. I was wondering if anyone else experienced things like this!

 

I developed really bad nerve pain as the first sign something was wrong. My left toes had sharp, burning pain like a knife for almost a week. Then i started getting pins and needles, burning, prickling, numb feelings in my lower arms and legs. This was accompanied by weakness in my limbs. I also had a couple of episodes of uncontrollable shaking from head to toe. The first episode last 5 hours. I also had regular muscle spasms in different sections of my body. I didn't experience horrific GI symptoms; only mild diarrhoea, bloating, pain etc

I had 2 MRIs and it showed nothing out of the ordinary.

Edited by Anna Lyndal

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Yeah, the pin and needles was a big turn around sign years ago it would get really bad at points to almost like a hot burning needles being shoved into my body in moving waves. IT later progressed to other issues like looping broken record like thoughts where I would get stuck on something and it would just loop in my head and random bouts of hyde like anger and violence.
The theory is this part of it is the Magnesium Deficiency from the disease or other issues in combination with B-vitamins.

I initially started with Epson Salt Soaks when the needles started and took Doctors Best Magnesium Glycinate back then. I moved to Natural Vitality Calm dosed to tolerance to deal with my constipation (I was going every 5-11 days with hard stools then) which was also a sign of extreme magnesium deficiency. I have moved back to Doctors Best to firm up issues with D now days.
B-vitamins I took Energy Drinks at first moved to this questionable supplement then to what I use now days. A combination of Liquid Health Energy & Stress along with the Neurological support from the same company 1tbsp each 3 times a day. I started these before I even knew it was celiac, it was not til a other issues showed and degrading health made me find out through odd methods.

These helped with issues but I did not get them to go away until over a half year into the gluten free diet and intestinal healing. Now days after a gluten exposure initially I get motor control loss from gluten ataxia, then a few days later I do not know if it is deficiency induced or the ataxia (immune system attacks my nervous system in response to gluten exposure) But some of the mental issues with depression hit

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Please research gluten ataxia which is a very real condition, but not well known.  If you suspect ataxia, then a very strict gluten free diet can help.  Really strict.  Do not eat out and avoid even processed gluten-free foods until you see improvement.  Nerve damage can be very slow to heal.  

https://www.medicalnewstoday.com/articles/320730.php

https://www.beyondceliac.org/celiac-disease/related-conditions/gluten-ataxia/

Make sure you are getting recommended follow-up testing.  This will help insure you are dietary compliant and check you for common vitamin deficiencies.

http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/

I wish you well.  

Edited by cyclinglady
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10 hours ago, Anna Lyndal said:

I have been recently diagnosed with celiac disease. I have looked at people's stories all over the internet but haven't seen people with a similar experience to me. I was wondering if anyone else experienced things like this!

 

I developed really bad nerve pain as the first sign something was wrong. My left toes had sharp, burning pain like a knife for almost a week. Then i started getting pins and needles, burning, prickling, numb feelings in my lower arms and legs. This was accompanied by weakness in my limbs. I also had a couple of episodes of uncontrollable shaking from head to toe. The first episode last 5 hours. I also had regular muscle spasms in different sections of my body. I didn't experience horrific GI symptoms; only mild diarrhoea, bloating, pain etc

I had 2 MRIs and it showed nothing out of the ordinary.

Hi Anna, I have read issues such as these on this forum, as the others have mentioned. I am sorry you are going through this.

I am curious if you might have neuroma https://www.mayoclinic.org/diseases-conditions/mortons-neuroma/symptoms-causes/syc-20351935 

I have it on both feet. The gluten-free diet seems to have helped. Proper innersoles that were made to measure help as well.

Did they do an MRI on your brain and spinal cord? on your legs or arms?

If you get the shaking again, be sure to note not only how long it lasts, if you are conscious the entire time and the size of the movements. Large movements or small and quick. check your temperature. Do you have any ringing in your ears or blurred vision or urinate yourself?

I hope you get proper care for your issues. It is nice to have support here.

Take care!

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Thanks for the information and suggestions!

I had an ultrasound on my foot and it was normal and I also had an mri on my spine and another on my brain and both were normal as well. 

The shaking felt like a muscle spasm in my whole body. I was aware and had no issues other than almost shivering all over even though I was not cold at all. 

My symptoms have calmed down a lot since becoming gluten free though. 

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On 12/4/2018 at 11:16 PM, Ennis_TX said:

Yeah, the pin and needles was a big turn around sign years ago it would get really bad at points to almost like a hot burning needles being shoved into my body in moving waves. IT later progressed to other issues like looping broken record like thoughts where I would get stuck on something and it would just loop in my head and random bouts of hyde like anger and violence.
The theory is this part of it is the Magnesium Deficiency from the disease or other issues in combination with B-vitamins.

I initially started with Epson Salt Soaks when the needles started and took Doctors Best Magnesium Glycinate back then. I moved to Natural Vitality Calm dosed to tolerance to deal with my constipation (I was going every 5-11 days with hard stools then) which was also a sign of extreme magnesium deficiency. I have moved back to Doctors Best to firm up issues with D now days.
B-vitamins I took Energy Drinks at first moved to this questionable supplement then to what I use now days. A combination of Liquid Health Energy & Stress along with the Neurological support from the same company 1tbsp each 3 times a day. I started these before I even knew it was celiac, it was not til a other issues showed and degrading health made me find out through odd methods.

These helped with issues but I did not get them to go away until over a half year into the gluten free diet and intestinal healing. Now days after a gluten exposure initially I get motor control loss from gluten ataxia, then a few days later I do not know if it is deficiency induced or the ataxia (immune system attacks my nervous system in response to gluten exposure) But some of the mental issues with depression hit

Very interesting! 

I am not deficient in magnesium but maybe it was do to a neuropathy or ataxia due to gluten as it has calmed down a lot since becoming gluten free.

On 12/4/2018 at 11:54 PM, cyclinglady said:

Please research gluten ataxia which is a very real condition, but not well known.  If you suspect ataxia, then a very strict gluten free diet can help.  Really strict.  Do not eat out and avoid even processed gluten-free foods until you see improvement.  Nerve damage can be very slow to heal.  

https://www.medicalnewstoday.com/articles/320730.php

https://www.beyondceliac.org/celiac-disease/related-conditions/gluten-ataxia/

Make sure you are getting recommended follow-up testing.  This will help insure you are dietary compliant and check you for common vitamin deficiencies.

http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/

I wish you well.  

Thanks for the information!

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