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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Son's legs shaking

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc. Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food....
    2. Scott Adams
      - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    3. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Son's legs shaking

      @lizzie42, You're being a good mom, seeking answers for your son. Cheers! Subclinical thiamine deficiency commonly occurs with anemia. An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal. Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps...
    4. Scott Adams
      - Scott Adams replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Bob red mill gluten free oats

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this...
    5. knitty kitty
      - knitty kitty replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease. Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease. Though having the genes for Celiac...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,869
    • Most Online (within 30 mins)
      7,748
    MaryannHall
    Newest Member
    MaryannHall
    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

    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
    • Scott Adams
      Bob red mill gluten free oats

      By Scott Adams · Posted

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      High TTG-IgG and Normal TTG-IgA

      By knitty kitty · Posted

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease.   Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease.  Though having the genes for Celiac is not diagnostic in and of itself, taken with the antibody tests, the anemia and your reaction to gluten, it may be a confirmation you have Celiac disease.   Do discuss Gastrointestinal Beriberi with your doctors.  In Celiac disease, Gastrointestinal Beriberi is frequently overlooked by doctors.  The digestive system can be affected by localized Thiamine deficiency which causes symptoms consistent with yours.  Correction of nutritional deficiencies quickly is beneficial.  Benfotiamine, a form of thiamine, helps improve intestinal health.  All eight B vitamins, including Thiamine (Benfotiamine), should be supplemented because they all work together.   The B vitamins are needed in addition to iron to correct anemia.   Hope this helps!  Keep us posted on your progress!
×
×
  • 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.