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

Nerve Issues And Diet?

daniella

By daniella
in Coping with Celiac Disease

Recommended Posts

daniella Newbie
daniella
Posted

About 2 months ago I developed a severe pain in my inner ankle/foot area and within a week or so was in the worst pain of my life. I have been in bed most of 6 weeks. I first thought it was an injury and had bone scans,xrays but it turned out not. I was reffered to a neurologist and was given emg tests and now have an mri on sat. I have sharp pains in my foot and tingling,numbing. I can barely walk and am in aircast when I do. I was also given a nerve block shot and am on nerve meds along with vicadin for pain. Anyhow I have been tested in the past for celiec and it didn't show but I have a lot of the symptoms including very high liver enzymes,low white blood count,bloating and cramping,usually constipated but when I go its a lot, and now this nerve issue. Before this nerve issue I always had sore joints and pains. I'm in my late 20's. I'm under the care of 3 plus docs right now but was wondering if anyone had any input and found a wheat free diet to help. Thank you and I hope this was the proper place to post.

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

Celiac.com Sponsor (A8-M):


GeoffCJ Enthusiast
GeoffCJ
Posted
About 2 months ago I developed a severe pain in my inner ankle/foot area and within a week or so was in the worst pain of my life. I have been in bed most of 6 weeks. I first thought it was an injury and had bone scans,xrays but it turned out not. I was reffered to a neurologist and was given emg tests and now have an mri on sat. I have sharp pains in my foot and tingling,numbing. I can barely walk and am in aircast when I do. I was also given a nerve block shot and am on nerve meds along with vicadin for pain. Anyhow I have been tested in the past for celiec and it didn't show but I have a lot of the symptoms including very high liver enzymes,low white blood count,bloating and cramping,usually constipated but when I go its a lot, and now this nerve issue. Before this nerve issue I always had sore joints and pains. I'm in my late 20's. I'm under the care of 3 plus docs right now but was wondering if anyone had any input and found a wheat free diet to help. Thank you and I hope this was the proper place to post.

I had nerve issues in my feet and hands, for 7-10 years. Tingling and numbness. It doesn't sound as severe as yours, mine is rarely debilitating, though on occasion it makes walking or doing simple manual tasks very difficult or uncomfortable.

I have seen some improvement in frequency since going gluten free 4 months ago, but not much improvement in severity. I am still experiencing some GI issues, I'm trying to eliminate corn now, and am starting to wonder about diary.

Geoff

RiceGuy Collaborator
RiceGuy
Posted

Two things in particular have helped me greatly with nerve function and such. A sublingual methylcobalamin supplement (vitamin B12), and a magnesium supplement. I recommend them most highly.

JNBunnie1 Community Regular
JNBunnie1
Posted

I have to bring something up that's very unpleasant, however unlikely. Has any of your doctors considered MS?

daniella Newbie
daniella
Posted
  • Author

Thank you for your replies. I feel very lonely,confused,and scared along with the pain. Thank you for the suggestions and personal experience. I have not been tested I don't think for ms. Unless that would show in my mri tomorrow. I did have bone scan,emg,and doppler,xrays and complete blood work. I'm very frustrated with docs at this point because one sends me to another or like the neurolgist who sent me to pt that overstretched me and now I'm in worse pain then before and why I started to take vicodin. I'm very concerned that all the waiting to get in for tests or for the doc to order more after waiting to see if the meds help or what the previous test shows is making things worse. I'm trying to not get ahead. On the note of stomach issues like last night I was up all night with cramping,bloating and feeling like I need to go.Also would it make a difference if not intolerant but sensitive if you just limit but not take away? Thank you again its very appreciated.

marciab Enthusiast
marciab
Posted

Your digestive issues could be from the Vicodan. All pain meds tear up my stomach. And make me feel like I am disconnected.

I hate it when doctors make me feel worse. I have pain in my right hip and foot from a herniated disk, but the excercises the PT has me doing actually make it feel better, not worse. Did your PT help you with these to make sure you were doing only the ones that did not cause you pain ? Lite stretching excercises are best.

Rotating ice and heat, 20 minutes on and 20 minutes off is actually better for pain than most drugs.

Gluten lite will still cause problems for a lot of people. I can't have any gluten whatsoever or else I will get my myoclonus and insomnia back.

Marcia

daniella Newbie
daniella
Posted
  • Author

Thanks well my stomach symptoms were before the meds but I do agree it has made it worse. I always though that celiec disease came with more diareah and I'm so constipated but when I do go its a lot and I feel drained like again I was up all night with such stomach bloating and still constipated.This is regardless of fiber intake. I saw a nutritionist because I eat a lot and though I don't feel hungry I feel malnurished if that makes sense. I have a bug appetite though regardless of hunger. As for pt actually I saw another doc yesterday and for my issue it aggrevates it. I had my mri today so will see and a nerve shot yesterday. If the next set of shots doesn't help and these tests don't show anything they think they will do surgery to release a nerve. So sick of this and it really teaches you how health is so important.

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

Celiac.com Sponsor (A8-M):


Archived

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

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

  • Member Statistics

    • Total Members
      133,155
    • Most Online (within 30 mins)
      7,748
    Beccad611
    Newest Member
    Beccad611
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Thanks so much! 
    • knitty kitty
      Seeking advice on potential gluten challenge

      By knitty kitty · Posted

      I have osteopenia and have cracked three vertebrae.  Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins.  Blood tests don't reveal the amount of vitamins stored inside cells.  The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four to forty-eight hours.  Those "normal limits" are based on minimum amounts required to prevent disease, not levels for optimal health.   Keep us posted on your progress.   B Vitamins: Functions and Uses in Medicine https://pmc.ncbi.nlm.nih.gov/articles/PMC9662251/ Association of dietary niacin intake with osteoporosis in the postmenopausal women in the US: NHANES 2007–2018 https://pmc.ncbi.nlm.nih.gov/articles/PMC11835798/ Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/   Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet https://pmc.ncbi.nlm.nih.gov/articles/PMC8398893/ Nutritional Consequences of Celiac Disease and Gluten-Free Diet https://www.mdpi.com/2036-7422/15/4/61 Simplifying the B Complex: How Vitamins B6 and B9 Modulate One Carbon Metabolism in Cancer and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC9609401/
    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      Seeking advice on potential gluten challenge

      By knitty kitty · Posted

      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
    • trents
      Have I got coeliac disease

      By trents · Posted

      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest you look for another physician who is more up to date in this area and is willing to work with you to get an accurate diagnosis. If, in fact, you do not have celiac disease but you know that gluten causes you problems, you might have NCGS (Non Celiac Gluten Sensitivity). There is no test available yet for NCGS. Celiac must first be ruled out. Celiac disease is an autoimmune disorder that damages the lining of the small bowel. NCGS we is not autoimmune and we know less about it's true nature. But we do know it is considerably more common than celiac disease.
×
×
  • 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.