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Peripheral Neuropathy....

EBsMom

By EBsMom
in Related Issues & Disorders

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EBsMom Apprentice
EBsMom
Posted

I've been having numbness in some odd places - my right mid-forearm down through the hand, my left hand, my left shin and ankle, and the left side of my back. It's always there, though usually worse in the evening, better in the morning. I've had a little numbness and tingling in my hands for a year or so, but it's never been very bad, so I ignored it. Now that I'm gluten-free/cf, it seems to be worse - ? I have a Dr's appointment scheduled for the week after next, and I'll be sure to tell him about it. Does this sound like peripheral neuropathy? Are there any specific blood tests (nutritional panel, ect.) that I should request my Dr. to run? Are there any supplements I might look at taking (I'm taking a gluten-free multivite...plannning to start probiotics this week.) Any thoughts are welcome!

Rho

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dadoffiveboys Rookie
dadoffiveboys
Posted
I've been having numbness in some odd places - my right mid-forearm down through the hand, my left hand, my left shin and ankle, and the left side of my back. It's always there, though usually worse in the evening, better in the morning. I've had a little numbness and tingling in my hands for a year or so, but it's never been very bad, so I ignored it. Now that I'm gluten-free/cf, it seems to be worse - ? I have a Dr's appointment scheduled for the week after next, and I'll be sure to tell him about it. Does this sound like peripheral neuropathy? Are there any specific blood tests (nutritional panel, ect.) that I should request my Dr. to run? Are there any supplements I might look at taking (I'm taking a gluten-free multivite...plannning to start probiotics this week.) Any thoughts are welcome!

Rho

I would recommend checking for Folic Acid deficiency. My father had a bad case of peripheral neuropathy (diagnosed by a neurologist) and a deficiency in folic acid. This affects the amino acids that make up the nerve cells or something like that. It takes MONTHS to recover the damage as nerve cells heal very slowly. Also I noticed if oyu go gluten-free/CF and make a mistake.. then you get it MUCH WORSE (it seems) although I'm not really sure it is.. you will probably have to stick with the diet for at least 6 months to really see improvements :(.. I wish it would go faster but my experience is no. My dad has been free 6 months now and he no longer has what you would call neuropathy - he also had sleep problems with it which are better as well.

DrMom Apprentice
DrMom
Posted

Please explain to your physician what has been happening. He will probably do quite a few blood tests, hopefully including vit B levels, especially B6 and B12. Do not change your medications meanwhile. Good luck

DrMom

GeoffCJ Enthusiast
GeoffCJ
Posted

Neuropathy was one of my big symptoms before diagnosis. Since going gluten-free, it has seemed at times to get better, then worse than I remembered, then better, then worse.... Frustrating. I've been taking B12, but perhaps I should look at Folic Acid too.

Geoff

lorka150 Collaborator
lorka150
Posted

I was diagnosed with Peripheral Neuropathy due to celiac disease from my neurologist. The longer you are gluten free, the better you will feel.

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    • trents
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By trents · Posted

      This is a common experience across the board with various brands of gluten-free bread products. Prices go up, size goes down. Removal of the egg component may be for the purpose of cost-cutting related to bird flu supply shortages or it may be catering to those with egg allergy/sensitivity, fairly common in the celiac community.
    • HAUS
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By HAUS · Posted

      Living with Coeliac Disease since birth, Bread has always been an issue, never too nice, small slices and always overpriced, But Sainsbury's Free From White Sliced Bread seemed to me to be an exception with it's large uniform 12 x 12cm slices that had the bounce, texture and taste of white bread even after toasting with no issue that it was also Milk Free. Unfortunately Sainsbury's have changed the recipe and have made it 'Egg Free' too and it has lost everything that made the original loaf so unique. Now the loaf is unevenly risen with 8 x 8cm slices at best, having lost it's bounce with the texture dense and cake like after toasting resembling nothing like White Bread anymore. Unsure as to why they have had to make it 'Egg Free' as the price is the same at £1.90 a loaf. Anyone else experiencing the same issue with it? - also any recommendations for White Bread that isn't prescription? / Tesco's / Asda's are ok but Sainsbury's was superior.
    • Mari
      My only proof

      By Mari · Posted

      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      Are Lindt chocolate balls gluten free?

      By trents · Posted

      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
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