Internal Tremors

[GFinDC]

6 minutes ago, Ryan McD said:

Hi - I have stumbled across this forum a couple of times. My mother was diagnosed as coeliac in 2016. Now she has aggressive internal vibrations; struggles to walk, sleeps only 1-2 hours per night (for last two years). We haven’t been able to find any solutions/effective treatments.

 

I wondered if you have been able to make any progress?

I hope you are feeling better,

 

Thanks for any pointers,

 

Ryan

She is following the gluten-free diet right?  If not, she needs to go gluten-free for her health to improve.  Another thing to consider is getting her vitamin/mineral levels checked.  Any deficiencies need to be corrected.   A thyroid levels check would be a good idea too.

Internal tremors is a pretty vague description.  So it's not easy to determine anything from that.

[Ryan McD]

Hi - thanks for the quick response.

 

Yep, vague, sorry. She is following a gluten-free diet.

My mum has developed balance issues and internal vibrations. She feels as though she is on a boat that is being thrown about and also internal vibrations, which are pretty aggressive; the internal vibrations feel like she has every limb of her body being shaken at a high frequency. The balance issue and vibrations are occurring constantly. It has been a 3/4 year medial journey and no abnormal test results have been identified; in addition to vitamins and other blood tests she has also had a lumber puncture. She has also had thyroid checked and returned as normal levels.

 

We have been through ENT, neurology, and gastro who have not been able to find anything to improve the symptoms.

My mum is no longer able to walk outdoors, or drive or work, so has had a significant impact, and continues to deteriorate.

[GFinDC]

16 hours ago, Ryan McD said:

Hi - thanks for the quick response.

 

Yep, vague, sorry. She is following a gluten-free diet.

My mum has developed balance issues and internal vibrations. She feels as though she is on a boat that is being thrown about and also internal vibrations, which are pretty aggressive; the internal vibrations feel like she has every limb of her body being shaken at a high frequency. The balance issue and vibrations are occurring constantly. It has been a 3/4 year medial journey and no abnormal test results have been identified; in addition to vitamins and other blood tests she has also had a lumber puncture. She has also had thyroid checked and returned as normal levels.

 

We have been through ENT, neurology, and gastro who have not been able to find anything to improve the symptoms.

My mum is no longer able to walk outdoors, or drive or work, so has had a significant impact, and continues to deteriorate.

Hi Ryan,

When you say she has been through gastro, KI assume that means they tested her gliaden antibodies?  If the gliaden antibodies are low then she is doing a good job on the gluten-free diet.   So celiac shouldn't be the problem, in theory.  So maybe better to look elsewhere for answers.  That being said though, it is not unusual for people to get gluten in their diet without knowing it.   Going to a really simple, whole foods diet with no oats or dairy is a good idea.  Eliminate processed foods and double check all meds and supplements, teas, etc.

It is possible to to develop food reactions to more than just wheat, rye and barley.  Any of the top 8 food allergens can be a problem.  In Europe they have a top 10 food allergens list or top 14 something like that.  Trying to one up us I guess.

Gluten ataxia is a symptom of celiac disease also.  in gluten ataxia the antibodies attack brain / nerve cells. Doctor's can sometimes see white spots on an MRI of the brain called UBO's (unexplained bright objects) in people with gluten ataxia.  Nerve / brain affects of celiac may be reversible, but a very clean gluten-free diet has to be followed.

There are enzymes available that help with breaking down tiny amounts of gluten.  I'd think about trying some of those along with diet changes for a few months at least.  If there is any improvement then that might indicate gluten ataxia is happening.  It's something to try anyway.  A whole foods diet is the way to go for troubleshooting gluten-free diet related issues.

This link is to a short article on a gluten ataxia study.  They monitored 43 people and found improvement in ataxia symptoms after following a strict gluten-free diet.  The study says there was improvement even without enteropathy.  That means that the people didn't have any evidence of gut damage from celiac but still had ataxia.

https://jnnp.bmj.com/content/74/9/1221

Edited December 29, 2020 by GFinDC

[Saradee]

On ‎1‎/‎6‎/‎2019 at 11:40 AM, cyclinglady said:

@rbar70— have you ever taken a fluoroquinolone (e.g. CIPRO) antibiotic?  This drug now has a black box warning that warns about snapping tendons, neuropathies, aneurysms, blood sugar drops etc.

https://www.fda.gov/newsevents/newsroom/pressannouncements/ucm612995.htm

I had them after gallbladder surgery a decade ago.  I got a buzzing in my foot (imagine a bee inside your foot like something out of a B-rated horror flick).  I would get electrical jolts.  I will never take this drug again unless I was dying.  Who would want to get out of bed an spontaneously rupture my tendons.  Not this runner!  

 

CIPRO is a dangerous drug.  I had severe muscle pain, broke out in hives and had shortness of breath.  I knew immediately it was the CIPRO and stopped taking it.  I tell every doc I see that under no circumstances will I take CIPRO and they look at me like I am crazy.  Honestly, I will not take antibiotics of any kind unless I'm at deaths door.  Surely they (doctors) are aware of the side effects, but big PHARMA and all that....  I've warned anyone who will listen to avoid this drug!

[Sejnicku]

Hi,

id just like to add my own experience on this. I can see this thread has been going for a few years but it came up when i simply googled gluten shaking

so last October I started getting this kind of. Shaking. Internal shaking is a good way to describe it. But it would make my legs kind of become restless also. In the end i would feel disoriented as well and unable to balance properly.

luckily i was talking with my family at the time and they completely out of the blue mentioned how we have gluten and/or what issues (my poor nephew spends time in children’s hospital with stomach issues that seem to be related)

before October 2020 I knew I had mild allergic reactions to both gluten or wheat as well as diary but that was just stomach thing

For example I can’t drink beer because after just one I fall asleep  its not the alcohol because I can drink wine and no problems. Somebody on this thread mentioned feeling like being on a boat and that is what happened after drinking beer. Feeling unsteady and disoriented. And again after wine this never happened so it wasn’t the alcohol!
 

so again this was part of my life but never really impacted me too much. Just it was there.

and this is maybe why I want to make this post if anybody else is googling like me. I changed my diet after my family were talking about this because i was waking up like this every morning. And after a few days it just disappeared. I just started eating potatoes fish veg just nothing with wheat or gluten. That was i think around november.

last night I got lazy to cook and bought a burger and ate it including the bun. Woke up at 1am and wasn’t too bad. By 3am this crazy shaking again. Which I hadn’t felt in months since. I can’t promise its true but to me this kind of shaking has to be caused by this. Its nothing about anxious things or anything it because I ate this bread/buns

And one more thing quite relevant these days. This started as I said in October. There was a week then where I had no energy to even get out of bed. And a slight cough for couple of days nothing major. I was never tested for Covid 19 but since then have read quite a bit about Long Covid and people experiencing a sudden massive overreaction of their immune system.

And I’m no medical expert or anything. But people are mentioning B12 and Vit D. Which people talk a lot about in relation to Covid. Again maybe nothing really id have no idea. All i know is since October something changed in my body. Not just these shakes but joint pain, itching like crazy all parts of my body but mostly joints, disoriented. But stick with the diet. I’m fine. Just want to make this post incase anybody else is experiencing this. Luckliy I realised early to change my diet. Stick with it its ok. But something happened last October that has made my body totally overreact to once mild intolerance.

 

Anyway just hope this helps anybody.

 

 

 

 

[Scott Adams]

Hello @Ryan McD and welcome to the forum. The “Follow” link below indicates that @Valerief isn’t following this thread, but she may get this notification since I tagged them.

As you may know celiac disease can attack the nervous system and some people, which can cause gluten ataxia, seizures and brain issues. Is your mother on a 100% gluten-free diet, and have you been screened for celiac disease (All of her first-degree relatives should be screened for it)?

[RJK]

I know this is an old post but wanted to jump in anyway. I have been suffering from Internal Vibrations for about 8 years now. When they hit, they hit hard-over my whole body, 24 hours, could't sleep at night and had many other symptoms (hot flashes, palpitations, rashes, broken teeth, all over body aches, etc). But the internal vibrations were the worst. I went to an integrative medicine doc and after much money, tests, supplements and diet changes, am much better in all symptoms but the vibrations hang on. They were much improved after being diagnosed with sleep apnea and after taking an anti parasite prescription (a few times) and working hard to support my liver. I was deficient in so many nutrients which I have also worked hard to correct, I blame this on 50 years of undiagnosed Celiac. I also suspect mold and mercury since we had a leak for 13 years and I have a mouthful of fillings, some being replaced up to 2 times (I blame Celiac for this as well).

There is a facebook group called "internal vibrations" with lots of helpful and smart folks in same place, lately many more with long covid vibrations. Many find relief after being on a low histamine diet (google it). I have done so many diets but find the low histamine super hard. My guess is that this is a symptom that has many causes and each person has to search hard to find what works. But no worries, it will come. After years of hard work and researching on my own (doctors are of no help other than to look at me like I am nuts), it is nice to fine a supportive community. 

[Scott Adams]

Welcome to the forum @RJK. You mention a couple of times in your post your symptoms could be due to "50 years of undiagnosed Celiac," and it made me wonder if you are now on a gluten-free diet, and are self-diagnosed with celiac disease? 

Many of the symptoms you've suffered from could certainly be due to undiagnosed celiac disease and/or non-celiac gluten sensitivity, but you can't test for the latter yet, and in order to be tested for celiac disease you need to eat gluten daily for 6-8 weeks or the test results might be false negative. You may already know this.

[RJK]

Hi Scott-Thank you so much for reaching out. Yes, I am very strictly gluten free and have been for 10 years. I was tested for Celiac after being strictly off gluten for a year. My endoscopy was negative. My Gastro doc said it didn't matter, but after researching Celiac testing I understood that eating gluten is needed for testing. I felt 100% better since being off gluten so stayed strictly gluten free. I was later diagnosed with severe osteoporosis and many nutritional deficiencies. My Rheumatologist said that my osetoporosis, along with all of my previous symptoms, were classic Celiac. She advised me not to get retested as reintroducing gluten wasn't worth it. So, yes, I assume I am Celiac, but pretty sure I am.

I love your website info. I am always learning new things! Thank you.

[Scott Adams]

If you have been gluten-free for this long, and are still having tremors, be sure to consult with your doctor about them. They could be unrelated to celiac disease, and could also some other autoimmune disease.

Also, are you taking a good multivitamin & mineral supplement? Many celiacs get gluten ataxia and have brain and nervous system issues, and after going gluten-free and supplementing properly these issues can resolve. 

[RJK]

Oh yes, I bring this up to every doctor at every visit. They have no idea what this is and honestly, don't seem interested or curious. I am taking good supplements, yes. The supplements have helped.