Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Peripheral Neuropathy....


EBsMom

Recommended Posts

EBsMom Apprentice

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



dadoffiveboys Rookie
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

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

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

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

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,818
    • Most Online (within 30 mins)
      7,748

    vullnetg123
    Newest Member
    vullnetg123
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • AuntieAutoimmune
      Great tips, Deb. Thanks.  What a pity that they no longer mark items as gluten-free. And it is even more of a shame that you must bring protein bars instead of the crew helping you with your needs. Are you planning on sailing Royal again? 
    • Scott Adams
      I've not heard of any issues with Primal Kitchen, but it certainly would be worth not using the brand for a while to see if this helps. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful:    
    • Scott Adams
      If you are super sensitive you may want to look for only Certified Gluten-Free Products, as @trents mentioned.
    • Scott Adams
      I'm not sure about low calorie, as puddings are typically a dessert, but we do have this category: https://www.celiac.com/celiac-disease/gluten-free-recipes/gluten-free-dessert-recipes-pastries-cakes-cookies-etc/gluten-free-pudding-recipes/ This one might work if you cut back on the sugar:    
    • DebJ14
      We are off next week on our 9th RCCL cruise since our diagnoses.  I send an email to special_needs@rccl.com before every cruise letting them know that I am both dairy and gluten free and my husband is gluten free.   Unfortunately, with the new menus they introduced in 2023, they removed the gluten-free designation from each item on the menu.  Instead of having a dedicated person take gluten-free orders, it now falls to your regular wait staff.  Some have been great and some not so good.  We had a great cruise in May and hit it off with our head waiter.  She went the extra mile and ordered gluten free desserts that were not on the menu.  My problem arises from other food allergies.  I am allergic to dairy, beef, and several types of fish.  On those days my husband is a happy camper with a steak or salmon, veggies and a baked potato.  I end up not getting enough protein, so I bring protein bars.  I also bring snacks for the room. As long as the food is commercially prepared and unopened, you can bring it. Often the only dessert choices that are gluten free contain dairy, so I am out of luck.  But, if you are just gluten free, they have plenty of choices.  See the head chef in the Windjammer buffet and he will give you a tour of the gluten-free choices.  They usually have 2 gluten free desserts out at lunch and they are labeled gluten free. We have found that it works best to have assigned dining rather than anytime.  That way the waiters learn from the get go what our needs are, and we don't have to explain ourselves every night.  We also get a private table for 2.  I frankly got sick and tired of tablemates telling me a little bit of gluten would not hurt me.
×
×
  • Create New...