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New Celiac - Peripheral Neuropathy?

brandt

By brandt
in Coping with Celiac Disease

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brandt Newbie
brandt
Posted

Hi everyone,

 

Feeling a bit hopeless and thought I'd reach out to others for some advice and hope.

 

I was recently diagnosed with celiac disease (biopsy, flattened villi, blood test).

 

However, my main problem has been Peripheral Neuropathy.

 

It is felt as a freezing cold feeling, like cold air blowing on me, or I'm wearing wet clothes.  Primarily in legs, but also felt in arms and head.  It also causes stinging pin pricks and sharp pains when really bad...suspect this might be from eating gluten.

 

Has anyone else had similar symptoms?  This is significantly affecting my quality of life, and I am desperate to find a solution.  

 

I also keep getting exposed to gluten somehow.  I have become paranoid of everything I eat.  This results in constipation, dermatitis herpetiformis, stomach pain, gas, bloating and, it SEEMS, a worsening of my peripheral neuropathy.  I have also wondered if it could be due to a vitamin deficiency and have been taking sublingual B-12 and a pretty potent multivitamin.  No improvement.  

 

Finally, two neurologists have checked me for MS, MRI's were negative.  Fairly certain it's somehow related to celiac disease.  Is this possible?  

 

Thank you so much for any help (or hope) you might be able to offer!

 

 

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cyclinglady Grand Master
cyclinglady
Posted

Please read jebby's blog located on this forum:

 

https://www.celiac.com/gluten-free/blog/1038/entry-1883-my-oh-my-peripheral-neuropathy/

 

There are others who have the same issues with neuropathy.  

 

Best Wishes!

1desperateladysaved Proficient
1desperateladysaved
Posted

Welcome!  Flattened villi take a while to recover, but they can.  It sounds like you are on the right track taking some nutrients.  Did you have a test to find out what other deficiencies you have?  Sorry you have this difficulty and I hope you will be feeling better soon.

 

My villi were heavily damaged.  My Functional Medicine nurse said that when the villi have major damage, they can't do their job of telling the pancreas to fire.  She had me take Pancreatic Enzymes to help break down my food while the villi heal.  You may want to look into that idea. 

 

Get Well, whatever you do,

 

D

greenbeanie Enthusiast
greenbeanie
Posted

Another person on this forum recommended magnesium supplements when I was experiencing similar symptoms, and that made a HUGE difference for me. Within days the feeling of internal shaking was gone, and tingling in my leg improved noticeably within weeks. After several months of taking about 500mg of magnesium daily (with dosage approved by my doctor), I stopped taking it and the leg tingling returned. So I started again. Hopefully someone who knows more about it than I do will chime in shortly, but I'd say it's worth a try. My magnesium blood level was near the lower end of the normal range but not seriously low, though I've heard that blood levels aren't very accurate. I'd had diarrhea many times a day for 20 years, so I guess it's not surprising that I needed more magnesium. I do not have an official celiac diagnosis, though, so I'm still not totally sure what is causing what. Years of previous nerve conduction tests and cortisone shot treatments had failed to help the peripheral neuropathy. Anyhow, the combination of magnesium supplements, high doses of probiotics, and a gluten-free diet have totally changed my life for the better.

I also had a very weird reaction to Epsom salt baths (magnesium sulfate), and I wasn't quite sure what to make of that. I had a really strong reaction to even soaking in it. I've kept up the baths with lower amounts of Epsom salts, and that seems to be beneficial too. It's not really clear to me how much truth there is to the claim that magnesium is absorbed through the skin.

Good luck! I hope you get some relief soon.

FruitEnthusiast Enthusiast
FruitEnthusiast
Posted

I had some Peripheral Neuropathy in my feet until I started on the gluten free diet. For me it was the first symptom to dissapear completely and I haven't had a problem with it since. I hope that is the case for you too. Keep going, the symptoms get better :)

ragtag Rookie
ragtag
Posted

I've developed some neuropathy as well. I'd heard that celiac can have neurological manifestations and I believe this is true for me, because brain fog and coordination issues were among the first of my symptoms. My neuropathy comes and goes and mostly feels like something is crawling on me, it is not painful but pretty distracting. No numbness, but there are waves of tingling here and there. For me what is most concerning is that the neuropathy has developed months after my diagnosis and even after a follow up TTG antibody test came back negative/normal. 

I was concerned about neurological diseases like MS, so I went to a neurologist, who did a full exam on me (no MRI or imaging, just reflex, strength, and balance testing, as well as checking sensation) and didn't find anything abnormal. She said that a lot of doctors (especially neurologists) don't quite understand how wide-ranging the problems created by celiac can be. She gave me a prescription for a medication that is used off-label to treat neuropathy (typically in people with MS, diabetes, etc). I've only been taking it a week or so, so  it's too early to say whether it will help or not. I'm hoping that the neuropathy doesn't worsen and that eventually it goes away. If it does worsen, I'm going to push for an MRI.

According the to U of Chicago Celiac Center, it's possible for neurological problems to appear even after being gluten-free for some time, so I am hoping that my (and your!) vigilance with the diet will begin to pay off soon. I know how you feel in that continuing to feel crappy even after going gluten-free is really bad for your outlook and confidence because you constantly feel like you're not doing enough or being careful enough. Personally, I feel like every health problem I've had is rearing its head now that I have gluten under control.  

designerstubble Enthusiast
designerstubble
Posted

Another person on this forum recommended magnesium supplements when I was experiencing similar symptoms, and that made a HUGE difference for me. Within days the feeling of internal shaking was gone, and tingling in my leg improved noticeably within weeks. After several months of taking about 500mg of magnesium daily (with dosage approved by my doctor), I stopped taking it and the leg tingling returned. So I started again. Hopefully someone who knows more about it than I do will chime in shortly, but I'd say it's worth a try. My magnesium blood level was near the lower end of the normal range but not seriously low, though I've heard that blood levels aren't very accurate. I'd had diarrhea many times a day for 20 years, so I guess it's not surprising that I needed more magnesium. I do not have an official celiac diagnosis, though, so I'm still not totally sure what is causing what. Years of previous nerve conduction tests and cortisone shot treatments had failed to help the peripheral neuropathy. Anyhow, the combination of magnesium supplements, high doses of probiotics, and a gluten-free diet have totally changed my life for the better.

I also had a very weird reaction to Epsom salt baths (magnesium sulfate), and I wasn't quite sure what to make of that. I had a really strong reaction to even soaking in it. I've kept up the baths with lower amounts of Epsom salts, and that seems to be beneficial too. It's not really clear to me how much truth there is to the claim that magnesium is absorbed through the skin.

Good luck! I hope you get some relief soon.

Omg. Sorry. I just had to chime in here. You are the first person EVER I have heard of to mention internal shaking! I had it for years, especially when tired or waking up from sleep. I thought it was just me. It's gone now as I have been gluten-free for nearly a year (my god, that's been a long year).... I had no idea it could be vitamin related... And I have never heard of anyone else experiencing it! Sorry, that's all... Just had to comment though!

In terms of peripheral neuropathy, I had tons of that... Sharp pains, hot pricking pains, numbness, pins and needles, ants crawling, burning toes, all sorts of things. I had extensive damage to villi. It took me 3 mo the of b12 before I noted an even slight improvement. 6 months, better improvement. Now... Much better, almost gone (dare I say) occasional problems, but hardly much to grumble about.

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1desperateladysaved Proficient
1desperateladysaved
Posted

Omg. Sorry. I just had to chime in here. You are the first person EVER I have heard of to mention internal shaking! I had it for years, especially when tired or waking up from sleep. I thought it was just me. It's gone now as I have been gluten-free for nearly a year (my god, that's been a long year).... I had no idea it could be vitamin related... And I have never heard of anyone else experiencing it! Sorry, that's all... Just had to comment though!

In terms of peripheral neuropathy, I had tons of that... Sharp pains, hot pricking pains, numbness, pins and needles, ants crawling, burning toes, all sorts of things. I had extensive damage to villi. It took me 3 mo the of b12 before I noted an even slight improvement. 6 months, better improvement. Now... Much better, almost gone (dare I say) occasional problems, but hardly much to grumble about.

I also had this internal shaking every day of my life.  I thought I was a very nervous person.  The shaking went away after 3 days on magnesium supplement.  Magnesium can cause diarrhea, (I say this from experience) and my chiropractor has told me not to take it when you are experiencing diarrhea.  You may want to have someone trained in nutrition to counsel you.

 

I am still having trouble with neuropathy.  Jebby just mentioned hers went away fairly suddenly after quite a long time, so I feel hopeful still.

 

Diana

greenbeanie Enthusiast
greenbeanie
Posted

It was Diana (1desperateladysaved) who first suggested the magnesium possibility to me, in reference to the shaky feeling. What a change for the better! I doubt I ever would have connected it to a vitamin deficiency on my own, especially since I'd seen multiple specialists for the leg tingling - which was annoying but not my main concern - and none of the doctors had ever mentioned vitamins. I'd been assuming the internal shaking was some sort of blood sugar problem, though I'd been tested for diabetes many times and my blood sugar was always totally normal. Now I can even drink coffee and not get the jitters, whereas before I'd felt like I was full of caffeine even when I'd had none!

designerstubble Enthusiast
designerstubble
Posted

Well what an interesting thread for me! Thanks ladies! I can't believe the symptoms of internal shaking you describe. It's just like that. I also for a time thought it could be sugar related... But worked it for myself eventually that it couldn't be sugar. After my diagnosis I kind of put it down to adrenal fatigue. I thought that my cortisol was probably completely out. It went away quickly I must admit... The neuropathy as I said before took ages.

Wow. That jittery horrible shaking. I would wake up so severly shakily that once or twice I wondered if I was about to fit. Horrible. Ugh. I had a milder version of this daily (like a caffeine hit)...

Now I know that I wasn't crazy!! I used to ask people if they ever felt shaky when they awoke etc.... Blank stares from everyone!! Hugs to you all :)

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