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

Bad Good Bad Good Cycle

white

By white
in Related Issues & Disorders

Recommended Posts

white Newbie
white
Posted

Hi all,

Do you all have jerky movements - muscle spasms?

Tonight we have been to the emergency room two times. first, I took my husband there because he was feeling very tired, was having hard time in walking, he had very intense muscle spasms - jerking movements in his legs and arms - they just came and went...At the emergency room they gave him IV, checked his blood level, and gave a medicine to relax him.. they couldn't find anything... we came home.. but after a while he had muscle spasms again - but not like minor ones that he usually has, these were intense jerky movements.. so I took him back again.. they did a CAT scan, everything looked normal...they suggested us to see a neurologist...

He has been gluten free since july (4 months)

He is very scared and I dont know what to do..

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

Celiac.com Sponsor (A8-M):


rinne Apprentice
rinne
Posted

Hi and welcome. :)

Could you share a little more information? Has your husband been ill for a while? How was he diagnosed? Does he have other symptoms? Do you know what his B12 levels are at?

I do have twitches but I am not sure they are related to the Celiac, I have been thinking they are related to Lyme disease which I have also.

white Newbie
white
Posted
  • Author
Hi and welcome. :)

Could you share a little more information? Has your husband been ill for a while? How was he diagnosed? Does he have other symptoms? Do you know what his B12 levels are at?

I do have twitches but I am not sure they are related to the Celiac, I have been thinking they are related to Lyme disease which I have also.

Hi Rinne,

Like everybody else, we had hard time in diagnosing him with gluten intolarence..First they said it was acid-reflux --a year later they said it is IBS -- two months later we ordered a lab work for celiac disease, finally, stool test from Enterolab (in Dallas) came positive. so since june15, we know he has gluten intolerance and staying gluten free.

His stomach and intestine pain is almost gone, the gluten-free diet helped him a lot. pins and needles and floaters in his eyes are occuring less frequently, with lower intensity..

His B12 was in the healthy range, closer to the lower level.

B12 293 pg/mL (ref range 157-1059)

but due to tiredness, the GI specialist gave him a B12 shot 5 weeks ago, and a week ago he got another shot.

as far as we know he doesn't have a lyme disease. The major things, now, he is having are muscle spasms-jerking, light headedness, and fatique. this morning we will go see his doctor.

marciab Enthusiast
marciab
Posted

I had myoclonus (jerking) and problems walking (ataxia), but they went away after going gluten-free. The myoclous went away after 10 months and the problems walking went away after 1 year. :D:D

Actually, the myoclonus may have gone away earlier, I just didn't know it was possible and kept on taking my meds (Klonopin). I didn't realize I was getting better until I figured out that the meds made me feel completely drugged during the day. I had problems with fatigue and feeling drugged for 16 years so to me this was normal. :(

My myoclonus was most noticeable when I would try to fall asleep or try to write. I would jerk myself awake everytime I went into REM (sleep disorder test confirmed nocturnal myoclonus). Sometimes they would be intense enough to feel like I had cleared the bed.

And my hand would jerk each time I would try to write. My signature looked like two seagulls. If I slowed down and really concentrated it was better, but then my hand would eventually start jerking again. It was very frustrating.

As far as mobility problems go, my legs would get wobbly and feel like they would not suport me. I needed a motorized cart to grocery shop, but if one was not available I would use a shopping cart to lean on. I would get stabbing pains if I continued to try to walk. The right foot would drag on occasion.

Basically, I was told that I had chronic fatigue syndrome and that people with CFS have nuerological problems. :ph34r:

Thought I should add that I have seen plenty of doctors. At least 5 nuerologists including the Mayo Clinic in Jacksonville, FL. My mri should white lesions on my brain which they said were no big deal and consistent with people who have migraines. I had a few migraines 20 years ago.

Editing to say I am sorry this is so long. But, I wanted to add that I still have some neurological problems creep up from time to time. The myoclonus comes back if I get any gluten. After about 6 months on the diet I started having a fluttering feeling in both of my arms. I went away thankfully.

Hope this helps.. Marcia

loraleena Contributor
loraleena
Posted

The American normal for B-12 is way to low. Japan looks at a low normal as 550 I believe.

georgie Enthusiast
georgie
Posted

My B12 was 248 and Dr did weekly shots for 6 continuous weeks with me. Perhaps you need more B12?

white Newbie
white
Posted
  • Author

Thanks for all. We saw his neurolojist this tuesday. It seems like the relaxation medicine that doctor gave him at the ER made his muscle spasms very intense..As its effect dissapeared he felt better - since tuesday he has no muscle spasms. I hope it will go like that.

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

Celiac.com Sponsor (A8-M):


  • 2 weeks later...
white Newbie
white
Posted
  • Author

nope! it did not go like that - the jerking is back. his legs and arms jerk constantly when he tries to fall in sleep - it is frustrating since we know that he is 100% gluten free. shampoo, food, drinks...everything.

it might be RLS (restless leg syndrom) or something else...we are working on it :))

We are seeing a new neurologist, he is running bunch of tests, so, lets see.

aikiducky Apprentice
aikiducky
Posted

As others have said, neurological symptoms can take quite a while to clear after starting the diet. 4 months is not really that long in this respect. So I hope he'll still improve. :)

Pauliina

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. knitty kitty
      - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed. Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    2. knitty kitty
      - knitty kitty replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fruits & Veggies

      Hello, @Jordan Carlson, So glad you're feeling better. Tecta is a proton pump inhibitor. PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12. Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the...
    3. knitty kitty
      - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1. There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine. In Thiamine deficiency, the body...
    4. Scott Adams
      0

      Inmate with Celiac Disease Wins $630,000 After Jail Denies Gluten-Free Food

    5. trents
      - trents replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,019
    • Most Online (within 30 mins)
      7,748
    Nancy Adams
    Newest Member
    Nancy Adams
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • knitty kitty
      Positive biopsy

      By knitty kitty · Posted

      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Fruits & Veggies

      By knitty kitty · Posted

      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      Positive biopsy

      By knitty kitty · Posted

      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Positive biopsy

      By trents · Posted

      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
    • pothosqueen
      Positive biopsy

      By pothosqueen · Posted

      26F!
×
×
  • 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.