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

Gluten Ataxia/tremors

susan7fink

By susan7fink
in Super Sensitive People

Recommended Posts

susan7fink Rookie
susan7fink
Posted

My son was diagnosed several months ago.. He has psoriatic arthritis, he has learning difficuties (working memory, short term memory) he has been in speech, OT, and on a complete fluke we found out he had celiacs,, not the common systems. confirmed by blood work and biopsy. Soon after.. he started having tremors.. started out where i couldnt even see them until he pointed it out (hes 9)  now they are worse. started to do PT but then he broke his elbow badly in gym.. so we have to forgo that for another 4 weeks. He doesnt complain.. but his stomach up high and middle , back mostly upper near shoulder blades and around the side.. ankles knees and fingers.. Took him to a neurologist who said bc of his celiacs .. he believes it has effected his cerebellum (ataxia) and is going to brain storm with his rheumatologist. I have read several articles on this .. but they are hard to find.. i am very curious if anyone else has delt with this.. and why its not getting better being gluten free.. but am finding out about trace gluten.. as the tremors get worse the more worried i get and the more difficult it becomes. I do NOT want to go on high dose meds that have many side effects at 9!

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

Celiac.com Sponsor (A8-M):


1desperateladysaved Proficient
1desperateladysaved
Posted

I felt like I had the tremors my whole life.  My chiropractor found I was low in magnesium and we supplemented it.  My tremors went away and didn't return.  I would recommend checking nutrient levels before considering any drugs. 

dilettantesteph Collaborator
dilettantesteph
Posted

I am sorry that you are dealing with this.  I am someone who is very sensitive to trace gluten.  I have some neurological effects, but not tremors.  My son is also very sensitive to trace gluten and it leads to severe learning disabilities for him.  He goes from getting among the highest grades in his class when he is healthy to failing everything when he is glutened.  He was diagnosed at age 10 and is now 16.  It took us a long while to figure out how to avoid trace contamination.  There was a lot of painful trial and error.  There were a lot of trips to doctors offices and negative medical tests run looking for other sources of the problems. 

 

 I suggest that a good starting place is this study: Open Original Shared Link

This will speed up your learning process quite a bit.  When we started the was so little known about it that we met with skepticism everywhere.  Another good resource is Jane Anderson at about.com.  

 

At age 9, your son has a few years before those grades will count towards college.  Be patient with yourself as you learn.  Take care of yourself through this stressful time and you will be better able to take care of your son.  

susan7fink Rookie
susan7fink
Posted
  • Author

Thank You.. so im not going crazy lol.. i kept saying this is too many issues for a 9 year old to have,, they have to be connected .. just didnt have a clue it was going to be the gluten.. thanks for the links and websites.. I rather would go natural then drugs for sure.. he takes vit D and krill oil.. magnesium may be needed.. also more plant food less boxed "gluten Free" foods since its hard to define how much trace gluten is in it. I thought gluten-free was difficult enough.. But well .. we do what we have to do. I love all the support on here and hearing different testimonys. makes me feel not so alone.

susan7fink Rookie
susan7fink
Posted
  • Author

oh the tremors started at or around the time we went gluten-free is this odd?

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. Iam
      - Iam replied to Larzipan's topic in Related Issues & Disorders
      33

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      Yes. I have had the tmj condition for 40 years. My only help was strictly following celiac and also eliminating soy. Numerous dental visits and several professionally made bite plates did very little to help with symptoms
    2. trents
      - trents replied to Scatterbrain's topic in Sports and Fitness
      6

      Feel like I’m starting over

      Cristiana makes a good point and it's something I've pointed out at different times on the forum. Not all of our ailments as those with celiac disease are necessarily tied to it. Sometimes we need to look outside the celiac box and remember we are mortal humans just like those without celiac disease.
    3. Scott Adams
      0

      New Research Reveals Why the Gut May Stay Sensitive Even After a Gluten-Free Diet

    4. bobadigilatis
      - bobadigilatis replied to Larzipan's topic in Related Issues & Disorders
      33

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      Also suffer badly with gluten and TMJD, cutting out gluten has been a game changer, seems to be micro amounts, much less than 20ppm. Anyone else have issues with other food stuffs? Soy (tofu) and/or milk maybe causing TMJD flare-ups, any suggestions or ideas? --- I'm beginning to think it maybe crops that are grown or cured with glyphosphate...
    5. cristiana
      - cristiana replied to Scatterbrain's topic in Sports and Fitness
      6

      Feel like I’m starting over

      Hi @Scatterbrain Thank you for your reply. Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct. Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,302
    • Most Online (within 30 mins)
      7,748
    Mamacin
    Newest Member
    Mamacin
    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

    • Iam
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Iam · Posted

      Yes.  I have had the tmj condition for 40 years. My only help was strictly following celiac and also eliminating soy.  Numerous dental visits and several professionally made bite plates  did very little to help with symptoms
    • trents
      Feel like I’m starting over

      By trents · Posted

      Cristiana makes a good point and it's something I've pointed out at different times on the forum. Not all of our ailments as those with celiac disease are necessarily tied to it. Sometimes we need to look outside the celiac box and remember we are mortal humans just like those without celiac disease.
    • bobadigilatis
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By bobadigilatis · Posted

      Also suffer badly with gluten and TMJD, cutting out gluten has been a game changer, seems to be micro amounts, much less than 20ppm.  Anyone else have issues with other food stuffs? Soy (tofu) and/or milk maybe causing TMJD flare-ups, any suggestions or ideas? --- I'm beginning to think it maybe crops that are grown or cured with glyphosphate. Oats, wheat, barley, soy, lentils, peas, chickpeas, rice, and buckwheat, almonds, apples, cherries, apricots, grapes, avocados, spinach, and pistachios.   
    • cristiana
      Feel like I’m starting over

      By cristiana · Posted

      Hi @Scatterbrain Thank you for your reply.   Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct.   Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two, following my diagnosis - I pinned everything on coeliac disease, but it turns out I wasn't always right!  Dizziness, lightheaded - I was eventually diagnosed with cervical dizziness (worth googling, could be your issue too, also if you have neck pain?)  A few months after diagnosis I put my neck out slightly carrying my seven-year-old above my head, and never assigned any relevance to it as the pain at the time was severe but so short-lived that I'd forgotten the connection. Jaw pain - stress. Tinnitus - I think stress, but perhaps exacerbated by iron/vitamin deficiencies. Painful ribs and sacroiliac joints - no idea, bloating made the pain worse. It got really bad but then got better. Irregular heart rate - could be a coincidence but my sister (not a coeliac) and I both developed this temporarily after our second Astra Zeneca covid jabs.   Subsequent Pfizer jabs didn't affect us. Brain fog - a big thing for people with certain autoimmune issues but in my case I think possibly worse when my iron or B12 are low, but I have no proof of this. Insomnia - stress, menopause. So basically, it isn't always gluten.  It might be worth having your vitamins and mineral levels checked, and if you have deficiencies speak to your Dr about how better to address them?    
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy.  Benfotiamine and other forms of Thiamine do not bother me at all.  There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes.  The sulfur in thiamine is in a ring which does not trigger sulfa allergy like sulfites in a chain found in pharmaceuticals.  Doctors are not given sufficient education in nutrition (nor chemistry in this case).  I studied Nutrition before earning a degree in Microbiology.  I wanted to know what vitamins were doing inside the body.   Thiamine is safe and nontoxic even in high doses.   Not feeling well after starting Benfotiamine is normal.  It's called the "thiamine paradox" and is equivalent to an engine backfiring if it's not been cranked up for a while.  Mine went away in about three days.  I took a B Complex, magnesium and added molybdenum for a few weeks. It's important to add a B Complex with all eight essential B vitamins. Supplementing just one B vitamin can cause lows in some of the others and result in feeling worse, too.  Celiac Disease causes malabsorption of all the B vitamins, not just thiamine.  You need all eight.  Thiamine forms including Benfotiamine interact with each of the other B vitamins in some way.  It's important to add a magnesium glycinate or chelate supplement as well.  Forms of Thiamine including Benfotiamine need magnesium to make those life sustaining enzymes.  (Don't use magnesium oxide.  It's not absorbed well.  It pulls water into the intestines and is used to relieve constipation.)   Molybdenum is a trace mineral that helps the body utilize forms of Thiamine.   Molybdenum supplements are available over the counter.  It's not unusual to be low in molybdenum if low in thiamine.   I do hope you will add the necessary supplements and try Benfotiamine again. Science-y Explanation of Thiamine Paradox: https://hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/#google_vignette
×
×
  • 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.