Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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:
    Where Your Contribution Counts!
    eNewsletter
    Support Us!

Internal Tremors


mmg21

Recommended Posts

mmg21 Newbie

I was dx with celiac disease a year ago by biopsy and blood test.  I have been very faithful with eating gluten-free.  And was doing really well until 4 months ago when I started getting "internal tremors" It feels like my body is vibrating but nothing can be seen on the outside.  I've been to the Dr and had a MRI of the brain and spine and everything came back normal. The Dr has tried different medications and they just make me feel  bad and do not help the tremors. So now I'm wondering if this is related to  my celiac and if there is something I'm missing.  Could shampoo, body wash, clothes detergent do this? I use Head & Shoulders, Olay body wash and Arm & Hammer clothes detergent. Maybe after using day after day it has gotten into my system? Or maybe a vitamin or mineral deficiency? I would be grateful for any ideas or thoughts.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



greenbeanie Enthusiast

Has your magnesium level been checked? I had this kind of internal shaky feeling, and also hand cramps, for years. Another forum member recommended magnesium, and it made all the difference in the world. Come to find out, a blood test from when I was in the hospital years ago had showed magnesium deficiency, and the doctor hadn't even told me about it. I only found out because I requested copies of my all my old lab records because I was trying to figure other stuff out. After six months of supplements my level was back into the normal range, and I cut the supplements back to every few days instead of daily. Whenever I try to stop it totally, though, the shaky feeling comes back in less than a week.

Edited to add: Oh, I see that this was your first post. Welcome to the forum!

Edited by greenbeanie
Link to comment
Share on other sites
across Contributor

Thank you, thank you, thank you for asking about this! I have these, too, and they are very distressing! Magnesium and sublingual B-12 seem to help with this for me. I also tested low in vitamin D, and it's possible that my supplementation with that has helped, as well.

 

Just my experience...hope you find something in it helpful.

Link to comment
Share on other sites
GFAnnie Explorer

I have no idea idea if celiac can cause this, but my husband experienced the same thing you describe when tapering off of his antidepressant, and also a benzodiazepine.  Any chance you have discontinued or starting taking these in the past year?  I'm sure there are other reasons, but I thought I'd comment since he experinced the exact same sensation, and doctors are maybe even more clueless to these a/d side effects than they are about celiac!

Link to comment
Share on other sites
mmg21 Newbie

Thank you so much for everyones response.  I will definitely have my Dr test for magnesium.  What kind of magnesium do you take?  There are so many different kinds. And no I have not been on any kind of medication at all. My aunt is seeing an accupuncturist and happened to ask her about my tremors and she seemed to think it had to do with the celiac and that I should think about seeing a naturepathic Dr.  This will probably be my next step if the magnesium doesn't help.  I figure it's not going to hurt me to take it before getting a blood test :).

Link to comment
Share on other sites
across Contributor

I take 250 mg of magnesium oxide daily, although I probably need to increase this, as I've been having a little more trouble with the tremor feeling lately.

Link to comment
Share on other sites
greenbeanie Enthusiast

The one I have now is a cal-mag-zinc vitamin with 500mg of magnesium oxide chelate. I don't know much about the ins and outs of different kinds, but I've tried several different magnesium supplements and they've all seemed to help.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



  • 2 years later...
Buckarett Newbie

Hi,

I am new to the group. Diagnosed Celiacs in August of this year.   I have had tremors or vibrations. It really kind of freaked me out, but everything seems to lately. I have. Upped up magnesium no help, b vit too, no help. My acupuncturist, Dr and natural chiropractor think it is stress. I am ready for it to stop. My anxiety has gone through the roof. Things that never bothered me do now. Add in allot of stressful situations lately too. 

I am just hoping they go away on their own. 

Link to comment
Share on other sites
ironictruth Proficient
On 6/25/2014 at 0:47 PM, mmg21 said:

I was dx with celiac disease a year ago by biopsy and blood test.  I have been very faithful with eating gluten-free.  And was doing really well until 4 months ago when I started getting "internal tremors" It feels like my body is vibrating but nothing can be seen on the outside.  I've been to the Dr and had a MRI of the brain and spine and everything came back normal. The Dr has tried different medications and they just make me feel  bad and do not help the tremors. So now I'm wondering if this is related to  my celiac and if there is something I'm missing.  Could shampoo, body wash, clothes detergent do this? I use Head & Shoulders, Olay body wash and Arm & Hammer clothes detergent. Maybe after using day after day it has gotten into my system? Or maybe a vitamin or mineral deficiency? I would be grateful for any ideas or thoughts.

I wish I had the answer. My left leg has been hurting and is now vibrating. I of course worry about a clot, but have a hunch it us nerve related. Is it your extremeties? If I find anything out I will keep you posted. I already take Mag too. 

Link to comment
Share on other sites
cristiana Veteran

Hi Buckarett

Can you describe where these tremors/vibrations are? 

Also, do you know what your B12 levels are? Sometimes a clinic will say you have normal B12 but by other countries' standards they would not be considered normal. It could be you are still deficient.

That said, I would say it is just possible it is connected to anxiety.

I had severe anxiety at the time of my diagnosis in April 2013 which persisted for some time.  The anxiety was due to deficiences, I believe, of B12 and iron, and once these were remedied I felt a whole lot better for a while.  But anxiety is an odd thing, it almost seems to me that once you have learned it and you think you have dealt with it it can come back in another guise.   In my case I became very attuned to any new symptoms  - whether it was joint pain, tingling, a feeling of buzzing, whatever it was, it was greatly magnified.  These are probably all things that 'normal' people get from time to time and wouldn't pay any attention to but I really focussed on them.  They seemd to get worse and worse.  Anyway, I took magnesium for some months, some good quality B12 sublinguals, and to be honest I really can't exactly recall why but it did all wear off.

 I thought I had left all this behind but in August this year when on holiday I had time to think about a deadline that I have coming up for a project.  I think possibly I got glutened, too,  because we ate out a lot and my legs and arms were fizzing a lot.   I then found  myself really focussing on these symptoms and they just got worse and worse.   And I then got a new one - it felt like there was a cell phone vibrating in my neck at one point!

Again, when the anxiety wore off, so did the vibrating.  This site obviously can't take the place of medical tests etc but at least in my case I can say that stress has been a factor.

Also, if you are able to get out and exercise that is a great way to deal with any adrenaline that might be in your system, making things worse.

 

Link to comment
Share on other sites
cristiana Veteran
9 minutes ago, ironictruth said:

I wish I had the answer. My left leg has been hurting and is now vibrating. I of course worry about a clot, but have a hunch it us nerve related. Is it your extremeties? If I find anything out I will keep you posted. I already take Mag too. 

Hi Ironictruth

I'm just wondering if this is nerve impingement?  Any pain in your hip/back area?

 

Link to comment
Share on other sites
cstark Enthusiast

What people have describing is seems to be happening my left leg.  It's almost a pulsating buzz and it varies in severity.  It is such a weird feeling.  This has been fairly recent.  Like maybe three to four weeks.

Link to comment
Share on other sites
ironictruth Proficient

Lower back pain in the am when I first get up. And I did notice some in the left hip today. Thinking about ditching the heels for awhile to see if that helps. 

Also my left leg. Dealt with a ton of ulnar nerve issues on that side as well. 

I bruised the left leg pretty badly awhile ago, but also noticed some pain back when I was running (stopped that in July). 

Chiro doc is on my list next. 

Link to comment
Share on other sites
cristiana Veteran

Ironictruth, I think you could be onto something.  Get him/her to check your sacroiliac joints too, they cause all sorts of referred pain.

Cstark - I have had this sort of pulsating buzzing in my face in the past, it waxes and wanes.  Doc thinks I have mild neuralgia.  Triggers seem to be poor neck position and also cold wind on my face. Caffeine too.  It plays up when I am anxious.  I also get buzzing in my left leg that seems to come and go. All very odd.  I think it could all be nerve damage caused by years of undiagnosed celiac disease.  

When it strikes I try to eliminate the triggers. Also, I have found taking a good vitamin B supplement helpful, as well as zinc and vitamin C.

Link to comment
Share on other sites
ironictruth Proficient
On 11/10/2016 at 7:18 PM, cristiana said:

Ironictruth, I think you could be onto something.  Get him/her to check your sacroiliac joints too, they cause all sorts of referred pain.

Cstark - I have had this sort of pulsating buzzing in my face in the past, it waxes and wanes.  Doc thinks I have mild neuralgia.  Triggers seem to be poor neck position and also cold wind on my face. Caffeine too.  It plays up when I am anxious.  I also get buzzing in my left leg that seems to come and go. All very odd.  I think it could all be nerve damage caused by years of undiagnosed celiac disease.  

When it strikes I try to eliminate the triggers. Also, I have found taking a good vitamin B supplement helpful, as well as zinc and vitamin C.

I will look this up. When the ulnar nerve was happening I found some exercises on line that helped. Would be nice tobget my leg back!

Link to comment
Share on other sites
cristiana Veteran
12 hours ago, ironictruth said:

I will look this up. When the ulnar nerve was happening I found some exercises on line that helped. Would be nice tobget my leg back!

It is interesting you have ulnar nerve issues.  Me too, left and right.  Starting really playing up just before diagnosis - I was always waking up with numb fingers, hands or lower arms.  So I think gluten had a bearing.  I had the tests and have a confirmed diagnosis for that one.

Link to comment
Share on other sites
ironictruth Proficient
8 hours ago, cristiana said:

It is interesting you have ulnar nerve issues.  Me too, left and right.  Starting really playing up just before diagnosis - I was always waking up with numb fingers, hands or lower arms.  So I think gluten had a bearing.  I had the tests and have a confirmed diagnosis for that one.

That is exactly how mine started! At the tail end of eating gluten again before an endoscopy last year. Same way, waking up in the middle of the night at first. Then it worsened, now better but I get some transient stuff in that arm. 

Link to comment
Share on other sites
cristiana Veteran
15 hours ago, ironictruth said:

That is exactly how mine started! At the tail end of eating gluten again before an endoscopy last year. Same way, waking up in the middle of the night at first. Then it worsened, now better but I get some transient stuff in that arm. 

It's always nice to meet a fellow suffer - although I am sorry you have this problem!  Also  I used to get, when it was at its worse, wierd feelings in my fingers when I unscrewed a jam jar top, for example.  Kind of pins and needles.  That doesn't happen anymore.  Now occasionally I find when I am washing my hands under hot water and wringing my fingers instead I get weird although mild sensory changes, a bit like there is a long hair caught on my fingers, or a cobweb. I've googled it an it seems this can happen with ulnar nerve problems.   Apparently ulnar nerve and carpal tunnel are something we celiacs are prone to.

Link to comment
Share on other sites
  • 2 years later...
rbar70 Newbie

Wanted to throw in my 2 cents.

Some months ago I began to get tingling/pins and needles in hands and feet.

I felt like there was a hair/string on my arm. None there. My arm/skin felt like it was wet- when it was not. I had crawling feelings on my scalp. Itchiness. Skin felt way more sensitive to touch. Also temp changes. I would also get sudden feeling of being very tired- in the legs. Im a runner- so this was weird. It felt like I had ran 20 miles. (without the pain).  I went to Dr and he checked a few spots in my back and feet and said- maybe a pinched nerve- but that there was nothing that worried him. If it got worse- to return or email him. Really?  Thats its?

As for feelings of vibrations......

1st one - I thought my phone was vibrating in my pocket. I went to grab it- nothing there.  But once it started happening on and off the 1st day--- It literally felt like the left side- of the head of my penis had a phone/beeper vibrating on it. AND it was  cyclic.

It would vibrate for a little, then stop, then return... just like a cellphone/pager.

This would happen over and over during the day. 1st few days I kept looking for a cell phone in my pocket.

The following week, I was sitting on my chair at work- and thought to myself- someone is calling me..... and I got up to get the phone on my chair-- as I thought I sat on it.... but my phone was on my desk. The vibration had now moved to the anus. This continued for several weeks.

Of course I hit the internet. As you all know- things like MS and other diseases come up. I also found that I was not the only guy getting the sensation of a vibrating penis.

As you all know- I was getting stressed with all these nerve issues. Waking up to a numb hand.

The vibration then moved to the area on my left leg right above the knee. It felt like it was vibrating.

Reading and reading- I saw some people comment on trying to go gluten free.

Thats what I did. The vibrating stopped. the tingling in feet stopped. The crawling on scalp stopped. over several weeks to a month- everything began to lessen.

I Know the test is to return to gluten containing foods... but im actually 'scared' to try it. Last week I think I ate some food with gluten- as several days later- I got a light increase of tingling in my fingertips. Some mild headaches and my feets skin felt a little more sensitive.

But the vibrating feelings have not returned.

At the peak of nerve issues- Id say were 100 (0-100). Now with removing gluten- Id rate the nerve issues a 10.

Gluten removal- is by looking at ingredients.

I have not gone to the extreme of 'cross' contamination gluten. For example- prepping food where my kids had just prepped a sandwich.

My wife talked a neighbor and mentioned that I was going gluten free- and she asked.... Was he feeling vibrations in this body?

 

 

Link to comment
Share on other sites
cyclinglady Grand Master

@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!  

 

Link to comment
Share on other sites
rbar70 Newbie

Quick answer. No antibiotics.

I never liked taking meds. Not even for headaches.

Though last year- I had an allergic reaction to something. Started with severe hives. Urgent care gave me a shot and prescribed Prednisone for a week. Well it have some weird side effects. Severe night sweats. Trembling hands. Racing heart. Numbness in the jaw. It also caused sudden mood changes- One minute im nice and kind--- then say a fly buzzed by-- and I was a raging bull.  Yeah- online search- theyre called Satans Tic Tacs. The day after my last dose- I was getting a haircut and the barber told me- my head was very hot. I then began to feel like I was going sideways, my right cheek/jaw went numb, trembling hands, sweaty palms, racing heart like I had just sprinted the last segment of a 10K race, stutter in voice, I thought I was having a stroke. Headed straight to urgent care- where they checked me out- and they told me all my vitals were fine. I was having no emergency.  Online search I saw that someone else had a similar side effect where they thought they were also having a stroke and headed to ER, only to be told the same thing.

If the Dr had told me of those side effects- I would have declined the meds.

I had an allergy test for shrimp, lobster, crab, and a few other items and they were negative.  No idea what caused the hives- so I bought myself a pair of EPI Pens just to be safe.

For a couple of months after that- I would get some light swelling in my lips... after eating Thai Food.  What was interesting is that Ive eaten Thai for years. Same dishes same restaurant.

The hives lasted about 2 weeks. Have not returned. No more swollen lips.

Sometimes I wonder if this was my bodys 1st reaction to gluten?

But the tingling/etc started maybe 6-8 months later roughly.

So Prednisone for 5 days. and no more meds.

I did start Magnesium and some B Complex once I went on the Gluten free.

 

Link to comment
Share on other sites
  • 4 months later...
Kittin Newbie
On 6/26/2014 at 2:47 AM, GFAnnie said:

I have no idea idea if celiac can cause this, but my husband experienced the same thing you describe when tapering off of his antidepressant, and also a benzodiazepine.  Any chance you have discontinued or starting taking these in the past year?  I'm sure there are other reasons, but I thought I'd comment since he experinced the exact same sensation, and doctors are maybe even more clueless to these a/d side effects than they are about celiac!

Hi. I hope this message can reach you. This is what I am feeling now. I am shaking from the inside my entire body. I was in Lexapro and Xanax for 9 years. Went cold turkey last january. Due to some stress had to restart last May. I then started feeling them like my whole body. How long before they disappeared for your husband? Appreciate the response. Thank you

Link to comment
Share on other sites
  • 10 months later...
JannaMo Newbie

Hi MMG21, I have the internal vibrations you describe (which I had over a year ago too). Last time they lasted about three months. I struggle to sleep and I feel like I’m dying or at least going crazy!  I thought maybe this was anxiety because of the Covid-19 virus and my husband’s pancreatic cancer but I’m not currently feeling so stressed and I still have the vibrations. I too have. Sharp nerve pain and numbness that moves around in my body but are pretty regularly in my feet and legs. I know I have food allergies but I have so many it’s really hard to avoid my allergens so I have about stopped trying!  But lately I start feeling weak and shaky and my head feels really full and my heart races and I feel quite exhausted within 20 minutes after eating most anything so I guess I better pay closer attention to food allergies. It almost feels like miniature anaphylaxis reaction that lasts for hours and hours.  

I am also wondering if those of you who have felt that magnesium and B vitamins help is because you normally don’t take enough in or maybe they aren’t absorbed correctly?? I wouldn’t be surprised if that is the case with me! 

Link to comment
Share on other sites
  • 4 months later...
Valerief Newbie
On 6/25/2014 at 10:47 AM, mmg21 said:

I was dx with celiac disease a year ago by biopsy and blood test.  I have been very faithful with eating gluten-free.  And was doing really well until 4 months ago when I started getting "internal tremors" It feels like my body is vibrating but nothing can be seen on the outside.  I've been to the Dr and had a MRI of the brain and spine and everything came back normal. The Dr has tried different medications and they just make me feel  bad and do not help the tremors. So now I'm wondering if this is related to  my celiac and if there is something I'm missing.  Could shampoo, body wash, clothes detergent do this? I use Head & Shoulders, Olay body wash and Arm & Hammer clothes detergent. Maybe after using day after day it has gotten into my system? Or maybe a vitamin or mineral deficiency? I would be grateful for any ideas or thoughts.

I suffer from internal shakes and have celiac. Have discovered that it happens when I eat something that is not gluten free. So now I am more careful with my diet. 

Link to comment
Share on other sites
  • 4 months later...
Ryan McD Newbie

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

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,500
    • Most Online (within 30 mins)
      7,748

    fine one
    Newest Member
    fine one
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • SuzanneL
      It was tTG IGG that was flagged high. I'm not sure about the other stuff. I'm still eating my normal stuff. 
    • cristiana
      Thank you for your post, @Nedast, and welcome to the forum. It is interesting to read of your experiences. Although I've not had TMJ, from time to time I have had a bit of mild pain in my jaw, sharp stabbing pains and tingling in my face which appears to have been caused by issues with my trigeminal nerve.  I read that sometimes a damaged trigeminal nerve in coeliacs can heal after adopting a gluten free diet.  I try to keep out of cold winds or wear a scarf over my face when it is cold and windy, those conditions tend to be my 'trigger' but I do think that staying clear of gluten has helped.  Also, sleeping with a rolled up towel under my neck is a tip I picked up online, again, that seems to bring benefits. Thank you again for your input - living with this sort of pain can be very hard, so it is good to be able to share advice.
    • Julie Riordan
      I am going to France in two weeks and then to Portugal in May   Thanks for your reply 
    • Nedast
      I made an account just to reply to this topic. My story resembles yours in so many ways that it is truly amazing. I also suddenly became lactose intolerant, went a little under 10 years attributing all my symtoms to different body parts, never thinking it was something systemic until much later. I had the same mental problems - anxiety, depression, fatigue, etc. In fact, the only real difference in our story is that I was never formally diagnosed. When I discovered that my myriad symtoms, that had been continuous and worsening for years, all rapidly subsided upon cessation of consuming gluten, I immediately took it upon myself to cut gluten out of my diet completely. I live in America, and had lost my health insurance within the year prior to my discovery, so I could not get tested, and I will never willingly or knowingly consume gluten again, which I would have to do in order to get tested now that I have insurance again. But that is not the point of this reply. I also had extreme TMJ pain that began within months of getting my wisdom teeth out at - you guessed it - 17 years old. I was in and out of doctors for my various symptoms for about 5 years before I gave up, but during that time I had also kept getting reffered to different kinds of doctors that had their own, different solutions to my TMJ issue, an issue which I only recently discovered was related to my other symptoms. I began with physical therapy, and the physical therapist eventually broke down at me after many months, raising her voice at me and saying that there was nothing she could do for me. After that saga, I saw a plastic surgeon at the request of my GP, who he knew personally. This palstic surgeon began using botox injections to stop my spasming jaw muscles, and he managed to get it covered by my insurace in 2011, which was harder to do back then. This helped the pain tremendously, but did not solve the underlying problem, and I had to get repeat injections every three months. After a couple of years, this began to lose effectiveness, and I needed treatments more often than my insurance would cover. The surgeon did a scan on the joint and saw slight damage to the tissues. He then got approved by insurance to do a small surgery on the massseter (jaw) muscle - making an incision, and then splicing tissue into the muscle to stop the spasming. It worked amazingly, but about three months later it had stopped working. I was on the verge of seeing the top oral surgeon in our city, but instead of operating on me, he referred me to a unique group of dentists who focus on the TMJ and its biomechanical relationship to teeth occlusion (i.e. how the teeth fit together). This is what your dentist did, and what he did to you was boderline if not outright malpractice. There is a dental field that specializes in doing this kind of dental work, and it takes many years of extra schooling (and a lot of money invested into education) to be able to modify teeth occusion in this manner. Just based on the way you describe your dentist doing this, I can tell he was not qualified to do this to you. Dentists who are qualified and engage in this practice take many measurments of your head, mouth, teeth, etc., they take laboratory molds of your teeth, and they then make a complete, life-size model of your skull and teeth to help them guide their work on you. They then have a lab construct, and give you what is called a "bite splint." It looks and feels like a retainer, but its function is entirely different. This is essentially a literal splint for the TMJ that situates on the teeth. The splint is progressively modified once or twice per week, over several months, in order to slowly move the joint to its correct position. The muscles spasm less, stress is taken off the joint, as the joint slowly moves back into its proper position. The pain reduces each month, each week, sometimes even each day you go in for a visit. The joint has to be moved in this manner with the splint BEFORE the modification to the teeth begins. They then add to your tooth structure with small bits of composite, to keep the joint in its proper place after it has been sucessfully repositioned. Subtracting from your teeth, by grinding down bits of your natural tooth structure, is done very conservatively, if they have to do it at all. This process worked for me - after six months, my face, jaw, neck all felt normal, and I had no more pain - a feeling I had not had in a long time. It also made my face look better. I had not realized the true extent that the spasming muscles and the joint derangement had effected the shape of my face. The pain began to return after a few months, but nowhere near where it had been before. This immense reduction in pain lasted for a little over two years. The treatment still ultimately failed, but it is not their fault, and it is still the treatment that has given me the most relief to this day. Later on, I even went about three years with very, very good pain reduction, before the joint severely destabilized again. This field of dentistry is the last line treatment for TMJ issues before oral surgery on the TMJ. There aren't as many denists around who practice this anymore, and the practice is currently shrinking due to dentists opting for less espensive, additional educations in things like professional whitening, which have a broader marketability. Getting this treatment is also very expensive if not covered by insurance (in America at least). My first time was covered by insurance, second time was not, though the dentist took pity on me due to the nature of my case and charged like a quarter of usual pricing. Most cases seen by these dentists are complete successes, and the patient never has to come back again. But occasionally they get a case that is not a success, and I was one of those cases. A little over a year ago, I began seeing the second dentist who keeps my TMJ stable in this manner. The first dentist retired, and then died sadly. A shame too, because he was a truly amazing, knowledgable guy who really wanted to help people. The new dentist began to get suspicious when my joint failed to stay stable after I was finished with the bite splint and his modifications, so he did another scan on me. This is ten years after the first scan (remember, I said the surgeon saw "slight" damage to the tissue on the first scan). This new scan revealed that I now no longer have cartilage in the joint, on both sides - complete degeneration of the soft tissues and some damage to the bone. The dentist sat me down and had a talk with me after these results came in, and said that when he sees damage like this in cases like mine, that the damage to the joint is most likely autoimmune, and that, in his experinece, it is usually autoimmune. He has sent patients with cases like mine to Mayo Clinic. He said he will continue to see me as long as the treatment continues to offer me relief, but also said that I will probably have to see a dentist for this type of treatment for the rest of my life. He is not currently recommending surgery due to my young age and the fact that the treatment he provides manages my symptoms pretty well. I still see this dentist today, and probably will see this kind of dental specialist for the rest of my life, since they have helped with this issue the most. I did not inform him that I am 100% sure that I have celiac disease (due to my complete symptom remission upon gluten cessation). I didn't inform him because I thought it would be inappropriate due to not having a formal diagnosis. I was disappointed, because I had believed I had caught it BEFORE it had done permanent damage to my body. I had never suspected that my TMJ issues may be related to my other symptoms, and that the damage would end up complete and permanent. Luckily, I caught it about 6 months after my other joints started hurting, and they stopped hurting right after I went gluten free, and haven't hurt since. I of course did the necessary research after the results of the second scan, and found out that the TMJ is the most commonly involved joint in autoimmune disease of the intestines, and if mutliple joints are effected, it is usually the first one effected. This makes complete sense, since the TMJ is the most closely related joint to the intestines, and literally controls the opening that allows food passage into your intestines. I am here to tell you, that if anyone says there is no potential relationship between TMJ issues and celiac disease, they are absolutely wrong. Just google TMJ and Celiac disease, and read the scientific articles you find. Research on issues regarding the TMJ is relatively sparse, but you will find the association you're looking for validated.
    • trents
      Welcome to the forum, @SuzanneL! Which tTG was that? tTG-IGA? tTG-IGG? Were there other celiac antibody tests run from that blood draw? Was total IGA measured? By some chance were you already cutting back on gluten by the time the blood draw was taken or just not eating much? For the celiac antibody tests to be accurate a person needs to be eating about 10g of gluten daily which is about 4-6 pieces of bread.
×
×
  • Create New...