Small fiber neuropathy

[JEL008]

Hi all,

I was diagnosed with Celiac about 3 weeks ago. My only symptom was Burning and tingling and pins and needles in my hands and feet. Turns out I have small fiber neuropathy caused by celiac. I have been gluten-free for three weeks or so I thought but last night all of the burning and pain came back full force. Kept me up all night long and this morning I’m still in pain. I take gabapentin for it and it’s not even helping. Is there a chance I may have accidentally eaten gluten somewhere? Has anyone else experienced this?

[kareng]

45 minutes ago, JEL008 said:

Hi all,

I was diagnosed with Celiac about 3 weeks ago. My only symptom was Burning and tingling and pins and needles in my hands and feet. Turns out I have small fiber neuropathy caused by celiac. I have been gluten-free for three weeks or so I thought but last night all of the burning and pain came back full force. Kept me up all night long and this morning I’m still in pain. I take gabapentin for it and it’s not even helping. Is there a chance I may have accidentally eaten gluten somewhere? Has anyone else experienced this?

You could have eaten gluten.  Celiac disease takes much longer than 3 weeks to heal and nerve problems can take months or years or never completely heal.

give it some time

[cyclinglady]

Have you ready the Newbie 101 thread located at the top of the “Coping” section of the forum?  Learning the gluten free diet takes time.  It is easy and normal to make mistakes in the early months of recovery.  Do not eat oats (some celiacs are oat sensitive), do not risk eating out,  and avoid processed foods (even certified gluten free ones) as much as possible.  Do this until you start to see some results.  

Karen is right.  Neuropathy usually takes the longest to resolve.  Some people (a very few) never recover  as the nerve damage can be permanent.  I have some still.  It ebbs and flows so we think it is related to one of my other autoimmune disorders.  Luckily, celiac disease is the only autoimmune disorder that you can recover from (that has been documented by medical).  I can share that my recent follow-up endoscopy revealed healed villi!  So, stay true to the gluten free diet!  

[Ennis-TX]

Sounds like you might have gotten glutened, even tiny amounts will make me become more numb to pain, heat, and start dropping things. Read the Newbie section...medical gluten free had one hell of a learning curve and is very strict with having to replace certain items and utensils and read every label. You will react to less then a crumb with celiac...gluten is a protein like blood...think of a CSI tech and finding it lol.
https://www.celiac.com/forums/topic/91878-newbie-info-101/

Yeah 5 years+ on the diet I am now starting to see some improvements with feeling. A few things that can help. Magnesium daily like Doctors best at night. B-vitamins I take Liquid Health Stress & Energy and Neurological Support 1 tbsp each 3 times a day, Vitamin D and bilberry have been shown to improving healing. I had the gluten ataxia with nerve damage and brain damage as a symptom.

 

[Alwayssomething]

Pins and needles and neuropathy can also be a sign of low B-12.  Have you had your vitamin levels checked?  

 

[Bookgirl32]

On 6/2/2018 at 8:46 AM, JEL008 said:

Hi all,

I was diagnosed with Celiac about 3 weeks ago. My only symptom was Burning and tingling and pins and needles in my hands and feet. Turns out I have small fiber neuropathy caused by celiac. I have been gluten-free for three weeks or so I thought but last night all of the burning and pain came back full force. Kept me up all night long and this morning I’m still in pain. I take gabapentin for it and it’s not even helping. Is there a chance I may have accidentally eaten gluten somewhere? Has anyone else experienced this?

I just experienced this the past two days in my face, on my cheek. It was numb, it just felt like it was sunburnt. I knew it had to be nerve related. We did just travel and I can't figure out if I was glutened (I was very careful, but did have to eat out), or if it was because I had to eat some dairy/grain in the last few days as it was my only option and prior to that I had been paleo for two months. It's slowly fading this morning. Really freaked me out though. I have a doctor appointment next week with my GP and was going to ask him to test for vitamin deficiencies. Does anyone know if low vitamin D can also cause this? I was low vitamin D a few years ago but no one figured out why. 

 

[vvicin02]

This was very informative. I too was diagnosed three weeks ago with celiac disease. I have been experiencing burning tingling pain in both my feet. I always thought it was plantar fasciitis from playing softball. I have been gluten free for 3 weeks and the discomfort is still there. I guess more time is required. I never even thought of mentioning this to my Doctor. 

[GFinDC]

21 hours ago, vvicin02 said:

This was very informative. I too was diagnosed three weeks ago with celiac disease. I have been experiencing burning tingling pain in both my feet. I always thought it was plantar fasciitis from playing softball. I have been gluten free for 3 weeks and the discomfort is still there. I guess more time is required. I never even thought of mentioning this to my Doctor. 

I have plantar fascitis.  If you aren't sure maybe try some of these tri-balance insoles.  These are available at many different stores under different names.  They actually work vs most of the other style insoles.  Like the gel insoles and such.  If these tri-balance insoles don't help the pain, it is probably not plantar fascitis IMHO.  So they may help you eliminate one possibility.

[Posterboy]

On 6/2/2018 at 8:46 AM, JEL008 said:

Turns out I have small fiber neuropathy caused by celiac.

Jel008,

Where you or are you taking a Statin by chance.

These should be taking with C0Q10 to avoid muscle pain.

Here is an article that has a good over view of some of the problems associated with taking a stain . .. especially without taking C0q10 to replace the C0q10 it blocks/interfers with in the body.

https://bpac.org.nz/BT/2014/August/myalgia.aspx

You should also have your Vitamin D levels check they (Vitamin D deficiency) has been linked to Fibromyalgia pain.

Here is a good link about it entitled "Vitamin D deficiency in fibromyalgia."

And Celiac's are often low in Vitamin D.

https://www.ncbi.nlm.nih.gov/pubmed/21375201

Here is new research about B-12 status and Small Fiber Neuropathy.

https://www.ncbi.nlm.nih.gov/pubmed/29052170

But it sounds like your possible Fibro could be being diagnosed as SFN.

If so there are things that can be done for Fibro and maybe even SFN if you believe the latest research on B-12.

Here is a verywell article about how Fibro and SFN might be linked.

https://www.verywellhealth.com/small-fiber-neuropathy-may-cause-fibromyalgia-pain-3972935

I also recommend this thread about similar Neurological Symptom's Post gluten free.

https://www.celiac.com/forums/topic/122115-neurological-symptoms-post-gluten-free-diet/

It is a little long but I think it might be helpful.

****this is not medical advice but I found stopping Statins helped my muscle/fibro pain symptom's especially if you take a statin you need to research C0q10 to see if it can help.

And now that I know there is a link between Vitamin D and B-12 levels and Fibro/SFN it is possible they also helped at the time but I did not know the association at the time.

Again  I hope this is helpful.

 2 Timothy 2: 7  “Consider what I say; and the Lord give thee understanding in all things” this included

Posterboy by the Grace of God,

 

[delawareperson]

To the original poster... how are you doing now? Any improvement in the neuropathy? I am facing a small fiber neuropathy diagnosis and started a gluten free diet about 3 weeks ago.