Jump to content

  • 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

Do You Ever Get Nerve Pain Like This? And Why Am I Getting This Now?

Sarah8793

By Sarah8793
in Coping with Celiac Disease

Recommended Posts

Sarah8793 Enthusiast
Sarah8793
Posted

Before going gluten free (and casein) I never had nerve pain like this. I'm suspecting that this is gluten related but not sure. I get random pain in my finger tips and toes, tops of my feet, shoulders, arms, and neck. It comes and goes throughout the day and I never know which body part will begin to ache at any moment. If it is from gluten then it is definately from cross contamination only because I am not eating anything that has gluten added to it. And if it is from gluten then it starts out intense and 2 weeks later is winding down. Anyone else have experiences like this in which it seems to be your nerves? Also, I know that as we go longer without gluten we become more sensitive but this seems ultra sensitive to me. And it seems like (from the nerve pain) that it is harming my body more now than before. Is this crazy? I never had nerve pain before. Totally frustrated now.

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

Celiac.com Sponsor (A8-M):


marciab Enthusiast
marciab
Posted

Sarah,

When I saw that you were having pains in the top of your feet, I just had to reply. I did this too for about a month. Prior to that I had a fluttering feeling in both fore arms for about a month. Presently I am getting a twitching sort of feeling in my right eye, but no real twitching ...

Since, my body has been healing since going gluten free, I am assuming that it is nerve endings healing. I had mild nueropathy in both hands and feet for over 16 years. The good news is that it is gone now, but the bad news is that my hands are even more sensitive to cold ... I have Raynaud's ...

I'm still figuring out my reactions to getting gluttened though. The last time I was gluttened I was awake until 6 am and felt depressed off and on for a few days.

Hopefully some one else has had this experience too. Marcia

Sarah8793 Enthusiast
Sarah8793
Posted
  • Author
I'm still figuring out my reactions to getting gluttened though. The last time I was gluttened I was awake until 6 am and felt depressed off and on for a few days.

Hopefully some one else has had this experience too. Marcia

Hi Marcia,

Thanks, I hope it is healing. My reactions to gluten seem to vary, but I have had the insomnia like you and then the blues. It is awful, because I stay in bed all night thinking I will eventually fall asleep and then around 5:00 a.m. I finally do. :blink:

Nancym Enthusiast
Nancym
Posted

I went through a period of weird nerve things happening. I've been taking a vitamin B complex and additional B12 because neuropathy can be caused by low B vitamins. Anyway, it has gotten MUCH better.

georgie Enthusiast
georgie
Posted

I have lots of nerve tingles in my feet and hands. My legs feel numb from knees down. I have very low B12, and need injections every month. I was doing better on weekly injections - so may have to go back to Dr and ask what to do.

darlindeb25 Collaborator
darlindeb25
Posted

It is true, when nerves are healing, they twitch, buzz, and other things, similiar to when they are dying....I was sick with celiacs for such a very long time before going gluten-free. My neuropathy was diagnosed over 3 yrs before we found out about celiacs. Mine started as carpal tunnel, then my toes became involved, my hips, and neck.

Last year I had a doppler done and they found periphreal neuropathy in my upper body and determined I have small fiber neuropathy in my lower body. I take 2400mcg of B12 daily and was able to slow the progression. This summer I found that it was slowly progressing again, some days I drag my feet, I trip up stairs, I have this terrible pinched nerve feeling in my shoulders and neck, and I suffer with dizzy spells--some days much worse than others and when someone stands close to me, as in hugging, I tip over backwards when I look up to them.

I truly hope yours is a reversal of the damage. Many celiacs find the damage repairs itself.

RiceGuy Collaborator
RiceGuy
Posted

I concur about the B12. I take the sublignual type.

As for my nerve pains, I narrowed it down to nightshades. Once I got those out of my diet, I started feeling better, but unfortunately it took quite some time to figure it out, and I think I now have a lot of nerve damage to be healed. It seems to be a very slow process, and as I research things, I add certain types of nutrients to my diet in order to maximize healing. Proper amounts of the right proteins and fats (plant-derived) are my latest focus. I wish I could help you more, and in a week I should have additional information once I've received some new stuff I ordered. I hesitate to make a recommendation until I've tried it, so I know whether it helps first. I'll try to post an update then, or feel free to PM me.

Hope your recovery is quicker than mine...

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

Celiac.com Sponsor (A8-M):


Sarah8793 Enthusiast
Sarah8793
Posted
  • Author

Thanks to all of you for your help! Many of you have mentioned B12. I had mine checked and I was told that it is in the normal range. Maybe I should be taking it anyway. I'll take a closer look at the nightshades family as rice guy mentioned. I feel so fortunate to me a member in this forum and receive such support. Thanks!

Sarah

RiceGuy Collaborator
RiceGuy
Posted
Many of you have mentioned B12. I had mine checked and I was told that it is in the normal range. Maybe I should be taking it anyway.

I've read that the body robs B12 from various places in order to keep blood levels up. It wouldn't surprise me one bit if that's true.

Nancym Enthusiast
Nancym
Posted

Do you know what the level of your B12 was? It can be low normal and cause issues. Lots of times doctors would treat for deficiency at the low end of the range. Technically in-range, but low enough that some patients have issues. It is a vitamin you don't store so unless you go crazy with it, you really can't over dose on it.

RiceGuy Collaborator
RiceGuy
Posted
Do you know what the level of your B12 was? It can be low normal and cause issues. Lots of times doctors would treat for deficiency at the low end of the range. Technically in-range, but low enough that some patients have issues. It is a vitamin you don't store so unless you go crazy with it, you really can't over dose on it.

Actually, the body can store B12 for decades. However, you'd need to be obtaining more than your body uses in order to build up reserves.

Research shows it is absorbed in smaller doses more effectively than higher doses, and around 3000 mcg is a typical daily recommendation, spread out over the entire day rather than all in one dose. Apparently there is little if any benefit from doses above around 5000 or 6000 mcg. I take 1000 mcg three times per day. There is no known toxicity level, so getting extra isn't supposed to cause any problems.

Sarah8793 Enthusiast
Sarah8793
Posted
  • Author
Do you know what the level of your B12 was? It can be low normal and cause issues. Lots of times doctors would treat for deficiency at the low end of the range. Technically in-range, but low enough that some patients have issues. It is a vitamin you don't store so unless you go crazy with it, you really can't over dose on it.

I don't remember the exact number but I'm thinking 500 something. I remember thinking that it was in the normal range but not near the top. I'm going to look for the sublingual type to start taking.

RiceGuy Collaborator
RiceGuy
Posted
I'm going to look for the sublingual type to start taking.

One I considered is Freeda brand, which specifies gluten-free. Some say wheat-free, but stop short of specifically saying gluten-free. The one I ended up with is from Source Naturals, as they are one of only a few others that state gluten-free. It's also the methylcobalamin type, which is apparently the best to take. It doesn't have a potency guaranty, but the ones that do typically cost far more.

After much research, I came to the conclusion that the methylcobalamin type is favorable over the other kinds. Most are cyanocobalamin, which must be converted by the body before it can be utilized, and actually has a cyanide molecule that the body has to dispose of. I didn't like the sound of that. Here's an article explaining these forms:

Open Original Shared Link

Sarah8793 Enthusiast
Sarah8793
Posted
  • Author
After much research, I came to the conclusion that the methylcobalamin type is favorable over the other kinds. Most are cyanocobalamin, which must be converted by the body before it can be utilized, and actually has a cyanide molecule that the body has to dispose of. I didn't like the sound of that. Here's an article explaining these forms:

Open Original Shared Link

Thanks for the B12 information.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,144
    • Most Online (within 30 mins)
      7,748
    Jenny0384
    Newest Member
    Jenny0384
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Jmartes71
      Related issues

      By Jmartes71 · Posted

      Its been a complete nightmare dealing with all these health issues one thing after another and being told many different things.I am looking for a new primary care physician considering when I told my past doctor of 25 years I was diagnosed before any foods eliminated from my diet and now this year at age 54 no longer able to push considering Im always exhausted, leg pain , stomach,skin and eye issues,high blood pressure to name a few all worsen because I was a  school bus driver and few years until my immune system went to hell and was fired because of it.Im still struggling now, Im sibo positive and been told im not celiac and that I am.I have a hernia and dealing with menopause. Its exhausting and is causing depression because of non medical help. Today I saw another gastrointestinalist and he said everything im feeling doesn't add up to celiac disease since my ITg levels are normal so celiac disease is under control and it's something else. I for got I had Barrett's esophagus diagnosed in 2007 because recent doctors down played it just like my celiac disease. Im currently looking for a pcp in my area because it is affecting me personally and professionally. Im told since celiac looks under control it's IBS and I need to see a therapist to control it. Gastrointestinalist around here think only food consumption and if ITG looks normal its bit celiac disease it's something else. Is this right? This is what im being told. I want medical help but told its IBS.Im feel lost by " medical team "
    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      My migraines generally have their onset during the early morning hours as well. Presently, I am under siege with them, having headaches all but two days so far this month. I have looked at all the things reported to be common triggers (foods, sleep patterns, weather patterns, stress, etc.). Every time I think I start to see a pattern it proves not to pan out in the long run. I'm not sure it's any one thing but may, instead, be a combination of things that coalesce at certain times. It's very frustrating. The medication (sumatriptan or "Imatrix") is effective and is the only thing that will quell the pain. NSAIDs, Tylenol, even hydrocodone doesn't touch it. But they only give you 9 does of sumatriptan a month. And it doesn't help that medical science doesn't really know what causes migraines. They know some things about it but the root cause is still a mystery.
    • Scott Adams
      Tamale ingredients

      By Scott Adams · Posted

      These are labeled gluten-free: https://www.amazon.com/Corn-Husks-Tamales-Authentic-Flavorful/dp/B01MDSHUTM/
    • Wheatwacked
      GI DX celiac despite neg serology and no biopsy

      By Wheatwacked · Posted

      Just a gluten free diet is not enough.  Now you have to identify and replenish your malnutrition.  Celiac disease is co-morbid with malabsorption syndrome.  Low vitamin D, Low Thiamine caused Gastointeston Beriberi, low choline, low iodine are common the general population, and in newly diagnosed Celiacs in the western culture its is more likely.  It takes time to heal and you need to focus on vitamins and minerals.  Gluten free foods are not fortified like regular processed foods.  
    • Sarah Grace
      Headaches / Migraines and Hypoglycaemia

      By Sarah Grace · Posted

      Dear Kitty Since March I have been following your recommendations regarding vitamins to assist with various issues that I have been experiencing.  To recap, I am aged 68 and was late diagnosed with Celiac about 12 years ago.  I had been experiencing terrible early morning headaches which I had self diagnosed as hypoglycaemia.  I also mentioned that I had issues with insomnia, vertigo and brain fog.   It's now one year since I started on the Benfotiamine 600 mg/day.  I am still experiencing the hypoglycaemia and it's not really possible to say for sure whether the Benfotiamine is helpful.  In March this year, I added B-Complex Thiamine Hydrochloride and Magnesium L-Threonate on a daily basis, and I am now confident to report that the insomnia and vertigo and brain fog have all improved!!  So, very many thanks for your very helpful advice. I am now less confident that the early morning headaches are caused by hypoglycaemia, as even foods with a zero a GI rating (cheese, nuts, etc) can cause really server headaches, which sometimes require migraine medication in order to get rid off.  If you are able to suggest any other treatment I would definitely give it a try, as these headaches are a terrible burden.  Doctors in the UK have very limited knowledge concerning dietary issues, and I do not know how to get reliable advice from them. Best regards,
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.