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. cristiana
      - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

      Ferritin levels. And see what your hemoglobin looks like too, that will tell you if you are anemic? You can have 'low normal' levels that will not be flagged by blood tests. I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial...
    2. Mari
      - Mari replied to KathyR37's topic in Coping with Celiac Disease
      5

      New here

      Hi Katht - I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was...
    3. Colleen H
      - Colleen H replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

      Yes thyroid was tested.. negative Iron ...I'm. Not sure ... Would that fall under red blood count? If so I was ok Thank you for the detailed response..☺️
    4. Colleen H
      - Colleen H posted a topic in Coping with Celiac Disease
      0

      Methylprednisone treatment for inflammation?

      Hi all !! Did anyone ever get prescribed methylprednisone steroids for inflammation of stomach and intestines? Did it work ?? Thank you !!
    5. cristiana
      - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse. But it is important not to stop the treatment. Regarding your problems with anxiety, again that is another symptom of a B12 deficiency. I didn't know...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,879
    • Most Online (within 30 mins)
      7,748
    Peta Dunn
    Newest Member
    Peta Dunn
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • cristiana
      Ibuprofen

      By cristiana · Posted

      Ferritin levels.  And see what your hemoglobin looks like too, that will tell you if you are anemic?  You can have 'low normal' levels that will not be flagged by blood tests.  I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial ordered an iron infusion for me as he felt my levels were too low and if he  raised them to 40, it would help.   Because you are not feeling 100% it might be worth looking at your levels, then discussing with your doctor if they are low normal.  But I stress, don't supplement iron without your levels being monitored, too much is dangerous.
    • Mari
      New here

      By Mari · Posted

      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
    • Colleen H
      Ibuprofen

      By Colleen H · Posted

      Yes thyroid was tested.. negative  Iron ...I'm. Not sure ... Would that fall under red blood count?  If so I was ok  Thank you for the detailed response..☺️
    • Colleen H
      Methylprednisone treatment for inflammation?

      By Colleen H · Posted

      Hi all !! Did anyone ever get prescribed methylprednisone steroids for inflammation of stomach and intestines?  Did it work ??  Thank you !! 
    • cristiana
      Ibuprofen

      By cristiana · Posted

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse.  But it is important not to stop the treatment.  Regarding your problems with anxiety, again that is another symptom of a B12 deficiency.   I didn't know what anxiety was until it hit me like a train several months before gastrointestinal issues began, so I can certainly relate.   Two books which helped me hugely were At Last A Life by Paul David (there is a website you can look up) and The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi.  Although his book is aimed at people who have depression, following the principals he sets out was so helpful in lessening my anxiety.  Llardi suggests we need to focus on getting enough: - physical exercise - omega-3 fatty acids - natural sunlight exposure - restorative sleep - social connectedness - meaningful, engaging activity   ... and we should feel a lot better. That is not to stay you must stop taking medication for depression or anxiety if you have been prescribed it, but adopting the changes Dr Llardi sets out in the book should really help. Can I just ask two more questions:  1) you say that you are B12 deficient, did they test your iron levels too?  If not, you really ought to be checked for deficiency and, 2) did they check your thyroid function, as an overactive thyroid can be cause rapid heartbeat and a lot of coeliacs have thyroid issues? Cristiana        
×
×
  • 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.