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

[Larzipan]

Hello, I've always wondered if I was alone on this or if others have had this same problem. I was diagnosed with Celiac almost one year ago at age 26 and never realized it was something causing me to have many odd symptoms. I had become lactose intolerant when I was 17 so I thought that that was the worst of my gut problems. For almost ten years I attributed all of my strange, upsetting, and uncomfortable symptoms to each specific body part, never thinking it was something internal and overarching as a result of eating gluten.

Other than out-of-the-blue panicky anxiety episodes and depressive thoughts, my worst symptom from eating gluten was always TMJ (aka severe jaw pain) that started around the time I got my wisdom teeth out at age 17. My parents mistakingly thought the person to help with my TMJ was my dentist who was extremely unhelpful and continually thought I was lying about my extreme jaw pain. Whenever I got my teeth cleaned I needed breaks every minute to close my mouth and relax my joints because the pain was so intense that my eyes would start tearing up. In addition, I needed a prop in my mouth to help keep it open because my joints were so achey and sore that I could barely hold my mouth open on my own. After three or four years of my dentist getting annoyed that he couldn't fix my "so-called" jaw pain, he decided to take a tool and dull my teeth down to completely change my bite. It was all a guessing game and he would "weld" my tooth down for a minute, tell me to close my mouth, and see if my new bite made my jaw joint relax more. This happened for at least half an hour, and obviously it wasn't working at all because my teeth weren't the true source of my pain, so I just lied and said he had fixed it so he would leave my mouth alone. It's been over five years and I'm always pissed that that dentist guessed how he could fix my bite so now my teeth don't line up properly. If I line up one side of my mouth then the other side's teeth don't touch one another any more. Last year, my new dentist and his dental hygienist were amazed at how dull my teeth were and how bizarrely all of my teeth matched up. They didn't understand why my dentist had done that unnecessary work to my mouth. They had assumed I ground my teeth at night and that's why my teeth were so flat and worn away.

Any way, every year from age 17 to 26 my TMJ pain got progressively worse. Sometimes my jaw would lock up when I was brushing my teeth in the morning and I couldn't finish without crying. I had a hard time opening my mouth more than a couple of centimeters at a time and I would get really bad migraines from their pain. I often had a hard time sleeping because it hurt to sleep on my sides because of the pressure it put on my jaw. I had started getting a massage once a month and I also saw a craniosacral therapist because they were the only ways to give me temporary relief from the never-ending jaw pain. It was because a very expensive experience for me with no end in sight, all while not being able to eat most foods because everything was too hard for me to chew. Even soft foods that involved a fair amount of chewing would throw my jaw over the edge because of "overuse".

There was even a time when I woke up one morning last year and my jaw had completely locked up. I was unable to open my mouth at all so I could not speak or eat. I could only eat liquid food that day and even that was uncomfortable and very challenging. It just so happened to occur the same morning of a primary care doctor appointment with a doctor I only saw once because she was so terrible. Instead of charging me for an annual exam with a copay, she billed me $275 (that's with insurance) for a specialized visit for jaw pain. The only reason I told her about my jaw was because I couldn't open my mouth during my appointment and I had to explain why I was whispering through my almost closed mouth. That PC doctor appointment was only scheduled as a follow up from some bloodwork that I had gotten done at my gynecologist because that doctor realized I was anemic and wanted to make sure I didn't have another underlying problem. I had done the research online and concluded that I had Celiacs, but this PC doctor was in denial and told me I was making it up. She said my iron and ferritin levels looked fine to her and that she would refer me to a gastroenterologist if I really felt the need to get tested for Celiacs. I never went to that PC doctor again because she doubted me, misunderstood me, and had no empathy whatsoever.   

A few weeks later I got the iGA test for Celiacs at my new gastro doctor and they didn't think that I would have it either. They said I probably just had IBS because I had chronic diarrhea, lactose intolerance, anemia, and nausea. In order to get confirmed for Celiac you needed to score above an 18 on the blood test. Anywhere from 0-17 meant you did not have it. I scored a 275 on that test and it was weirdly the best feeling in the world that I had been right all along. Multiple doctors over ten years told me I was fine and they just thought I might be a slightly anxious person, which could make my stomach upset from time to time. Most doctors also attributed my TMJ to anxiety. I even got an endoscopy when I was 16 because I had a long history of digestion problems, vomiting up acid, nausea, and abdominal discomfort. The results were inconclusive when I was 16 and my doctor just told my mom I had a lazy sphincter in my throat (LES) and that there was nothing he could do. I had apparently been tested for Celiacs by that same doctor when I was a teen, but he told my mom I would be fine. In the year 2020 I asked my mom if she had any notes from that doctor appointment and she looked it up and told me the doctor had said "Possible Celiacs based on blood test, but nothing to worry about."!!!!!! I was so pissed to learn that a different doctor thought I potentially had it but he immediately ruled it out as a possibility!!! I could have learned about this ten years earlier and had a completely different life where I was someone who actually had stamina, no anxiety/depression, no TMJ and other severe joint pain, and didn't need to have diarrhea 2-20 times a week!!!! 

Any way, I guess the point of this long post is that my jaw pain completely went away when I stopped eating gluten last October. All my other symptoms: joint pain, anxiety, depression, nausea, digestive issues, chronic diarrhea, lactose intolerance, and extreme fatigue... all went away. I've never known of anyone else who had that jaw problem from Celiacs so I'm really curious if anyone has a similar story to mine. I think I may have accidentally ate a trace amount of gluten last night because my neck tensed up and then my jaw locked up for the first time in 8 or 9 months. I wasn't able to sleep at all last night because of the extreme jaw pain and the migraine that came with it. I also got some of the worst anxiety of my life last night with the jaw pain. The main reason I'm writing this post is because I didn't think even a tiny amount of gluten (not even 100% sure I ate any!!!) could make my jaw joint get inflamed again so quickly. In case you're wondering, I had A&W cream soda with some SoDelicious soy vanilla ice cream in it last night, which I have never had before. I think that must have been the culprit because I haven't eaten anything new in a long time during this pandemic. 

 

Thanks for listening....    

[knitty kitty]

Larzipan,

Welcome to the forum!  I hope you will find helpful suggestions here.  We're not doctors, so we can't diagnose, but we can tell you what we have found helpful.

Yes, I've had problems with Bruxim.  I used to grind my teeth as a child. As a teen and young adult, migraines would follow nights of grinding and jaw clenching during the day.    During a Celiac Crisis before diagnosis, I clenched my jaw so tightly I broke off corners of two upper molars.  

Celiac Disease causes malabsorption which results in malnutrition.  Because of the damage done to the small intestine by Celiac Disease, Celiacs aren't able to absorb all the vitamins and minerals they need.  

Checking for and correcting nutritional deficiencies are part of proper follow up care for Celiacs.  Consulting with a nutritionist or dietitian may be helpful, too.

The following are some vitamins and minerals in which I was deficient.  Correcting the deficiency and supplementing with additional vitamins and minerals because of higher metabolic need has really helped me.

You can have "normal" blood tests for vitamins and minerals because the body likes to keep a certain amount in the blood stream to supply the brain.  But the body's stores of vitamins and minerals will be deficient inside body organs and tissues making proper digestion, organ function, and muscle movement difficult.  

Not getting enough Magnesium can cause muscles to be tense, tight and have difficulty relaxing.  I've found that supplementing with Magnesium helps dramatically with the jaw clenching and grinding.  

Niacin (Vitamin B3) is very helpful in being able to relax those tense jaw muscles.  Niacin has been used for years for stopping migraines in progress and preventing migraines.  Niacin helps relieve anxiety.  Niacin helps heal the small intestine.  

Not having enough Thiamine (Vitamin B1) can cause anxiety and "out of the blue" panic attacks.  Thiamine is essential in down regulating those fight-or-flight responses and the adrenaline surge that goes with it.  Without enough Thiamine to defuse adrenaline, you stay in that panicky mode.  Thiamine is needed for proper digestive juice production and release.  Thiamine helps prevent nausea.

Thiamine , Niacin and Magnesium work together to process carbohydrates and fats into energy your body can use. Niacin, Thiamine and Magnesium are essential for proper digestion.  

Perhaps when you ate that ice cream float, the influx of calories required more Thiamine, Niacin and Magnesium than your body had available to process all those extra empty carbohydrate calories.  A shortage of these would result in feeling as though you got glutened, because the same vitamins and magnesium are needed to process gluten containing carbohydrates into energy, leaving you depleted and tired. 

I've found supplementing with Vitamin D and omega 3 fats (evening primrose oil and flaxseed oil) helpful in keeping achy joints, not just my jaw, flexible and ache free.  CoQ10 and cod liver oil are helpful, but I'm allergic to fish, so I take the other ones.  Vitamin D also helps lift depression.

And get your eyes checked!  I've found I tend to clench my jaw if I'm squinting and need a prescription glasses update.  I also tend to clench if I'm starting at my computer screen for long periods.  Take breaks, look away from the screen, and move your eyes from side to side.  Look out of the corners of your eyes and blink several times.  

Hot or cold compresses can help as well.  Hot to relax the muscles, cool to relieve the ache.  A cold compress on the back of the neck or on the temples helps relieve migraine pain.  

I hope you feel better.  We're here with you on your Celiac Journey.  We'll keep you company during the pandemic.

Hope this helps!

Knitty Kitty

 

 

 

 

 

[gilligan]

I'm really surprised that none of the dentists you saw didn't refer you to an orthodontist. To make a long story short, I saw a dr. for what I thought was an earache, was referred to the dentist, and on to the ortho.  I received therapy, was fitted for a nighttime retainer, and everything is now fine.  TMJ is a misalignment of the jaw.  I don't think it has anything to do with celiac.

[UKPaul]

I had a long period of ongoing jaw pain and had the usual bloods, then ENT investigation etc and i was told there is nothing wrong. Some while later due to gastro pains i had the full tests for celiac (gastroscopy, bloods, etc) and was then diagnosed as celiac. After a few months of non gluten diet the neck pain went .. and has stayed away now for 18 months. 

[tech-writer]

Whenever I get “glutened”, my reaction varies.  when I eat a small amount, my temple muscles tighten. If I end up eating a larger amount, the muscles in my jaws tighten up and it is painful. Regardless of the amount, I get a migraine within the hour.  The next day, the tightness and pain is gone.
A while ago, I had two dentist appointments. For the first I could open my mouth without issue and had no pain. For the second, one of my go to restaurants failed me.  I wasn’t able to open my mouth as wide.  When I described the sensation in my jaw, my dentist who is celiac, said he has the same feelings I described, except they were in his legs.  

[Scott Adams]

My mother used to have major TMJ issues before and after she was diagnosed with celiac disease, but this did improve over time after she went gluten-free.

[Iam]

Absolutely agree.  Terrible terrible jaw pain since age 24. Many splints and night guards but still had it.  Celiac was undiagnosed for decades, unfortunately.  I am just now starting to get help. I self- diagnosed celiac 5 years ago with the help of a family member who is also celiac. Unfortunately, I have not been able to conclusively confirm this other than my testimonial. Night and day difference. Jaw pain, extreme migraines with nausea and vomiting, joint pain, abdominal issues, bloating, depression and anxiety all went bye bye.  Even my hair is thicker, shiny and healthy.  Skin is clear now. I know when I have had gluten with cross…

[pstar]

I have been having jaw pain issues for 3 years now and finally got into a local TMJ specialist, he quickly chatted about a night guard but then went deep into giving up gluten and dairy, which lead me to your thread to see if this was a "real" thing thanks for sharing your story! I have never had the endoscopy to confirm Celiac but I have blood and stool samples come back confirming I am intolerant to gluten so I guess I have to give this a real commitment 

[Wheatwacked]

pstar, Welcome to the forum.

TMJ was one of my 20 symptoms that I had that has gone away.

[imdoodah331]

On 7/1/2020 at 12:24 AM, Larzipan said:

Hello, I've always wondered if I was alone on this or if others have had this same problem. I was diagnosed with Celiac almost one year ago at age 26 and never realized it was something causing me to have many odd symptoms. I had become lactose intolerant when I was 17 so I thought that that was the worst of my gut problems. For almost ten years I attributed all of my strange, upsetting, and uncomfortable symptoms to each specific body part, never thinking it was something internal and overarching as a result of eating gluten.

Other than out-of-the-blue panicky anxiety episodes and depressive thoughts, my worst symptom from eating gluten was always TMJ (aka severe jaw pain) that started around the time I got my wisdom teeth out at age 17. My parents mistakingly thought the person to help with my TMJ was my dentist who was extremely unhelpful and continually thought I was lying about my extreme jaw pain. Whenever I got my teeth cleaned I needed breaks every minute to close my mouth and relax my joints because the pain was so intense that my eyes would start tearing up. In addition, I needed a prop in my mouth to help keep it open because my joints were so achey and sore that I could barely hold my mouth open on my own. After three or four years of my dentist getting annoyed that he couldn't fix my "so-called" jaw pain, he decided to take a tool and dull my teeth down to completely change my bite. It was all a guessing game and he would "weld" my tooth down for a minute, tell me to close my mouth, and see if my new bite made my jaw joint relax more. This happened for at least half an hour, and obviously it wasn't working at all because my teeth weren't the true source of my pain, so I just lied and said he had fixed it so he would leave my mouth alone. It's been over five years and I'm always pissed that that dentist guessed how he could fix my bite so now my teeth don't line up properly. If I line up one side of my mouth then the other side's teeth don't touch one another any more. Last year, my new dentist and his dental hygienist were amazed at how dull my teeth were and how bizarrely all of my teeth matched up. They didn't understand why my dentist had done that unnecessary work to my mouth. They had assumed I ground my teeth at night and that's why my teeth were so flat and worn away.

Any way, every year from age 17 to 26 my TMJ pain got progressively worse. Sometimes my jaw would lock up when I was brushing my teeth in the morning and I couldn't finish without crying. I had a hard time opening my mouth more than a couple of centimeters at a time and I would get really bad migraines from their pain. I often had a hard time sleeping because it hurt to sleep on my sides because of the pressure it put on my jaw. I had started getting a massage once a month and I also saw a craniosacral therapist because they were the only ways to give me temporary relief from the never-ending jaw pain. It was because a very expensive experience for me with no end in sight, all while not being able to eat most foods because everything was too hard for me to chew. Even soft foods that involved a fair amount of chewing would throw my jaw over the edge because of "overuse".

There was even a time when I woke up one morning last year and my jaw had completely locked up. I was unable to open my mouth at all so I could not speak or eat. I could only eat liquid food that day and even that was uncomfortable and very challenging. It just so happened to occur the same morning of a primary care doctor appointment with a doctor I only saw once because she was so terrible. Instead of charging me for an annual exam with a copay, she billed me $275 (that's with insurance) for a specialized visit for jaw pain. The only reason I told her about my jaw was because I couldn't open my mouth during my appointment and I had to explain why I was whispering through my almost closed mouth. That PC doctor appointment was only scheduled as a follow up from some bloodwork that I had gotten done at my gynecologist because that doctor realized I was anemic and wanted to make sure I didn't have another underlying problem. I had done the research online and concluded that I had Celiacs, but this PC doctor was in denial and told me I was making it up. She said my iron and ferritin levels looked fine to her and that she would refer me to a gastroenterologist if I really felt the need to get tested for Celiacs. I never went to that PC doctor again because she doubted me, misunderstood me, and had no empathy whatsoever.   

A few weeks later I got the iGA test for Celiacs at my new gastro doctor and they didn't think that I would have it either. They said I probably just had IBS because I had chronic diarrhea, lactose intolerance, anemia, and nausea. In order to get confirmed for Celiac you needed to score above an 18 on the blood test. Anywhere from 0-17 meant you did not have it. I scored a 275 on that test and it was weirdly the best feeling in the world that I had been right all along. Multiple doctors over ten years told me I was fine and they just thought I might be a slightly anxious person, which could make my stomach upset from time to time. Most doctors also attributed my TMJ to anxiety. I even got an endoscopy when I was 16 because I had a long history of digestion problems, vomiting up acid, nausea, and abdominal discomfort. The results were inconclusive when I was 16 and my doctor just told my mom I had a lazy sphincter in my throat (LES) and that there was nothing he could do. I had apparently been tested for Celiacs by that same doctor when I was a teen, but he told my mom I would be fine. In the year 2020 I asked my mom if she had any notes from that doctor appointment and she looked it up and told me the doctor had said "Possible Celiacs based on blood test, but nothing to worry about."!!!!!! I was so pissed to learn that a different doctor thought I potentially had it but he immediately ruled it out as a possibility!!! I could have learned about this ten years earlier and had a completely different life where I was someone who actually had stamina, no anxiety/depression, no TMJ and other severe joint pain, and didn't need to have diarrhea 2-20 times a week!!!! 

Any way, I guess the point of this long post is that my jaw pain completely went away when I stopped eating gluten last October. All my other symptoms: joint pain, anxiety, depression, nausea, digestive issues, chronic diarrhea, lactose intolerance, and extreme fatigue... all went away. I've never known of anyone else who had that jaw problem from Celiacs so I'm really curious if anyone has a similar story to mine. I think I may have accidentally ate a trace amount of gluten last night because my neck tensed up and then my jaw locked up for the first time in 8 or 9 months. I wasn't able to sleep at all last night because of the extreme jaw pain and the migraine that came with it. I also got some of the worst anxiety of my life last night with the jaw pain. The main reason I'm writing this post is because I didn't think even a tiny amount of gluten (not even 100% sure I ate any!!!) could make my jaw joint get inflamed again so quickly. In case you're wondering, I had A&W cream soda with some SoDelicious soy vanilla ice cream in it last night, which I have never had before. I think that must have been the culprit because I haven't eaten anything new in a long time during this pandemic. 

 

Thanks for listening....    

Thank you for sharing your experience.  Adequate medical care can be elusive for many of us.  I suffered with TMJ for many years.  My worst episode involved waking up one morning with my head twisted down so that my ear touched the top of my shoulder, and my jaw locked so that I couldn’t speak.  I thought I must have had a stroke.  My husband got me to the hospital, and stroke was quickly ruled out thank goodness.  That was when they diagnosed TMJ, saying I had pulled the muscle to the point of tearing.  I was in a neck collar for quite a long time.  I found a clinical trial going on in a nearby city and was able to be included.  I don’t know how many different study groups were set up, but I recall one group was immediately provided dental care and given custom fit bite apparatus to wear, and the group I was in received 6 weeks of biofeedback training.  Once I mastered the progressive muscle relaxation exercises, I will say I did get relief, but really only as long as I strictly followed that plan.  At about the same time, I began having a host of other strange symptoms that just seemed to accumulate and never get fully resolved.  I was told I had anxiety, depression, type A personality, too much stress, needed a healthier diet, and meanwhile every blood test, x-ray, MRI, etc would come back negative.  The only thing that did come back elevated on my bloodwork was my ESR, which is a sedimentation rate.  My doctor said it was indicative of inflammation, but not helpful for any diagnosis, because literally anything could cause that number to be elevated.  Each subsequent bloodwork follow up showed that ESR going higher and higher, but it was still basically ignored.  I was then diagnosed with Fibromyalgia and Chronic Fatigue Syndrome.  A few years later, I developed  IBS -D and Lactose Intolerance.  Then more food and seasonal allergies, then reactions to nearly every antibiotic, pain medication, excessive dry skin, hair shedding, skin rashes, on and on as if my entire system was short circuiting.  2 years ago I saw a nurse practitioner who said she suspected I have Celiac.  By then, I had been surviving by eating almost exclusively, applesauce, white rice, boiled chicken, and occasionally a plain baked potato with skin removed to try and control the diarrhea.  But she ordered the bloodwork and Celiac test, and of course it all came back negative.  No allergies to any of the long list of suspected food allergies.  She suggested I try a gluten free and lactose free diet anyway because she still felt I had intolerance for those.  I have followed that religiously for 2 years this coming June, with one episode of intentional self glutened set back, and one accidental gluten.  Both times I saw immediate and rather severe return of symptoms that were previously improved.  That was enough for me to stay committed to never eating gluten again.  Sometimes I think getting a formal diagnosis could be useful, but then I am just not willing at this time to intentionally poison myself just to have it documented as “real”.  

[Scott Adams]

@imdoodah331 it's too bad you had to go through all that to get a celiac diagnosis. Are you taking vitamin and mineral supplements? Many of the muscle and nerve symptoms you describe could be related to deficiencies, especially magnesium.

[ooshae]

Hello,

I could have swore that I wrote this entire post, it’s like a RE-write of my life. No seriously, I had an endoscopy as well- was diagnosed with “gastritis” and the dr shoed me away because it wasn’t as serious of a case yet, only hadn’t gone number 2 in over 7 days, idk but I think that’s pretty serious. Then got serious jaw pain after some dental work which lasted an excruciating 3 long weeks. Just now thought I got “glistened” by eating nachos at a bar (presumed to be fried in the same oil as gluten items). My jaw tensed up within 30-45 mins after with tightness and pain. Just wanted to confirm that you’re not alone. Thanks for posting!

[trents]

17 hours ago, FckGluten said:

Hello,

I could have swore that I wrote this entire post, it’s like a RE-write of my life. No seriously, I had an endoscopy as well- was diagnosed with “gastritis” and the dr shoed me away because it wasn’t as serious of a case yet, only hadn’t gone number 2 in over 7 days, idk but I think that’s pretty serious. Then got serious jaw pain after some dental work which lasted an excruciating 3 long weeks. Just now thought I got “glistened” by eating nachos at a bar (presumed to be fried in the same oil as gluten items). My jaw tensed up within 30-45 mins after with tightness and pain. Just wanted to confirm that you’re not alone. Thanks for posting!

"glistened"? Did you mean to type "glutened"?

[DanMc]

They definitely meant "glutened" 😊. Great thread btw, I've struggled with TMJ for decades, with my jaw threatening to "lock off" any time I take too big a yawn. I've learned coping mechanisms - if I cover my mouth when I yawn, the vacuum that forms seems to keep the whole mechanism in place. I've noticed this has eased considerably since going gluten-free, and my jaw and teeth all feel stronger. The site as a whole has been a bit of a lifesaver for me during some recent dark times, so thanks to Scott and all the mods.

[knitty kitty]

I've found good posture helps.  Keep your ears over your shoulders.  

Our posture tends to suffer when glutened because we tend to round our back to allow for abdominal bloating.  As our tummies bloat, curving our backs allows for more room in the abdomen to expand.  

Watch your posture when using phone and computer screens.  We tend to sit with our heads in a forward position.  This means our eight to twelve pound (bowling ball sized) head has to be supported by our thin stalk of a neck.  With a forward head position, our jaw muscles have to help support our heads.  This can cause fatigue and tightening in the jaw muscles. 

So keep your ears in line with your shoulders!

[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.

[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.

Edited March 29 by cristiana

[Scott Adams]

My mother who also has celiac disease suffered with TMJ for many years before her diagnosis, but her situation did slowly improve after going gluten-free, but it took a decade or so for most of her TMJ symptoms to go away.

[Nedast]

@Scott Adams She may not have any damage to the joint tissue, or only slight damage. In any case, if it healed or was minimal enough not to cause permanent symptoms, she is lucky. Joints don't tend to heal well, especially with more than very minor damage. When the cartilage is gone, it's gone. My tempromandibular joint won't be recovering from this, that is for sure. I have a similar experience to OP, in wondering what my life would have been like if I had found out the cause of my suffering much sooner. Joint damage isn't the only *potential* oral symptom that I have. The dental enamel on my two front teeth never completely formed, so they have been crowned since I was about 7 years old. Since everything that has ever been wrong with me physically and mentally seems to me to be connected to this one issue, I researched "dental enamel" with "celiac disease," and found out that improperly formed dental enamel on emerging adult teeth is a very telltale sign of celiac disease in childhood. It is such a telltale sign, in fact, that the EU has medical policy in place that attempts to ensure that children with dental enamel defects are referred by their dendist to a doctor, to be screened for celiac disease. This association and the resultant policy has been known and in place in the EU since the 90s. It is now the 2020s, and America still does not have anything like this. Dentists here are completely unaware of oral signs of celiac disease. If our medical organizations had followed the EU, I could have been spared 10-15 years of suffering and the diminshed life quality and expenses that are still to come.

[knitty kitty]

@Nedast,

I've experienced TMJ on and off throughout my life.  I've found that keeping my Vitamin D level up helps, as well as increasing Omega Threes are important in decreasing inflammation.  Several of the B Complex vitamins help to relieve the associated pain.

Supplementing these vitamins and nutrients are important in Celiac Disease because we have malabsorption.  Unless we supply our bodies with sufficient nutrients, our health suffers.

Here's some studies you may find helpful.

Circulating omega-6 and omega-3 polyunsaturated fatty acids in painful temporomandibular disorder and low back pain

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9561056/

https://pubmed.ncbi.nlm.nih.gov/32122630/

https://pubmed.ncbi.nlm.nih.gov/34915341/

Vitamin D3 Metabolism and Its Role in Temporomandibular Joint Osteoarthritis and Autoimmune Thyroid Diseases

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9964750/

Association of Serum Vitamin D Level with Temporomandibular Disorder Incidence: A Retrospective, Multi-Center Cohort Study Using Six Hospital Databases

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10343618/

Vitamin D and Temporomandibular Disorders: What Do We Know So Far?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8070666/

Effectiveness of Vitamin D along with Splint therapy in the Vit D deficient patients with Temporomandibular disorder-A Randomized, double-blind, placebo-controlled clinical trial

https://pubmed.ncbi.nlm.nih.gov/36510949/

Biochemical changes associated with temporomandibular disorders

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6381509/

Serum nutrient deficiencies in the patient with complex temporomandibular joint problems

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2446412/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8474295/

Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review

https://pubmed.ncbi.nlm.nih.gov/35156556/

Update on Safety Profiles of Vitamins B1, B6, and B12: A Narrative Review

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7764703/

Thiamine deficiency disorders: a clinical perspective

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451766/

Hope you can find relief with Thiamine, Pyridoxine, Cobalamine, Omega Threes and Vitamin D.

Keep us posted on your progress! 

[Nedast]

@knitty kitty I get my D levels checked as part of my routine blood test every six months. It may be because of my latitude, since I live in Michigan. My D levels are at the top of the normal range in the warm months, and dip to the bottom of the normal range in winter. I supplemented with vitamin D, B complex, and other nutrients essential to recovering celiacs back in 2019, and noticed a difference for sure. I stopped supplementing with them after I no longer noticed a difference. I did supplement with omega 3 during this time as well, but now just eat fatty fish once or twice per week. I haven’t had pain from inflammation or other symptoms of celiac disease since about 2-3 months after I mastered a gluten free diet at the beginning of 2020. I have only had one accidental exposure since that time. I was eating mustard that was not gluten free for about 3 weeks in 2022, and noticed a recurrence of symptoms, that began abating again when I stopped eating it.  I supplemented with B vitamins after that for a while. I had a blood anomaly after that, which they at first thought was anemia, but which turned out to be something called “transitory erythrocytosis,” which I had never had before. It appeared after this incident, and disappeared about 10 months later and hasn’t returned. This is a common blood disorder in celiac disease.

 

All in all, I haven’t needed to supplement much since shortly after going gluten free. But the pain in my joint is not from inflammation, as there is no more joint tissue left to be inflamed, since it is completely gone. The pain in my jaw is now entirely from the spasming muscles. Since there is no joint tissue in my joints, there is nothing holding my lower jaw to my upper jaw. The joint, if not kept stable, slips out of socket and my lower jaw begins drifting, which causes the muscles to spasm.

[knitty kitty]

@Nedast,

I like to keep my Vitamin D levels between 75 - 100 nmol/L year round.  At this level, Vitamin D can work and do other things than keeping bones healthy, like build cartilage.  What are your "normal" ranges?

I disagree about not needing to supplement.  It takes longer than a month or two of supplementing to correct deficiencies.  Considering that the gluten free diet can be nutritionally inadequate, supplementation is a must.  We need to remember that the RDA guidelines for vitamins were set as minimum requirements to prevent disease (not optimal health) back when processed foods were not part of the diet.  Diets high in fats and carbohydrates demand more essential vitamins like Thiamine and Niacin to convert them into energy for growth and repair of our bodies.

For example, Deficiency in Thiamine Vitamin B1 is linked to Erythrocytosis.  

Spasming muscles are linked to Thiamine and magnesium deficiencies.  Thiamine, Pyridoxine, and Cobalamine relieve pain.

I've found proper posture, chin-tucking and "mewing" all extremely helpful in coping with my TMJ.  I do mewing to strengthen neck and jaw muscles and prevent mouth-breathing.  Mewing really helps relieve my TMJ pain.  

Hope this helps!

References:

Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8398893/

Micronutrient deficiencies are frequent in adult patients with and without celiac disease on a gluten-free diet, regardless of duration and adherence to the diet

https://pubmed.ncbi.nlm.nih.gov/36096056/

The Effect of a High-Dose Vitamin B Multivitamin Supplement on the Relationship between Brain Metabolism and Blood Biomarkers of Oxidative Stress: A Randomized Control Trial

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6316433/

Thiamine deficiency disorders: a clinical perspective

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451766/

Erythrocytosis in thiamine deficient rats

https://pubmed.ncbi.nlm.nih.gov/7334740/

Hiding in Plain Sight: Modern Thiamine Deficiency

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

And...

https://www.webmd.com/oral-health/what-is-mewing

And...

https://mewing.coach/blog/chin-tucking

Serum nutrient deficiencies in the patient with complex temporomandibular joint problems

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2446412/

Role of B vitamins, thiamine, pyridoxine, and cyanocobalamin in back pain and other musculoskeletal conditions: a narrative review

https://pubmed.ncbi.nlm.nih.gov/33865694/

[Wheatwacked]

On 3/30/2024 at 12:16 PM, knitty kitty said:

I've found that keeping my Vitamin D level up helps, as well as increasing Omega Threes are important in decreasing inflammation.  Several of the B Complex vitamins help to relieve the associated pain.

Absolutely agree.  The US diet as recommended is very high omega 6.  Sweet potatoes are 17:1 while russet potatoes are only 3:1.  Wheat flour is a wopping 22:1.  Optimal is 1:1. No wonder we all hurt.

 

On 3/30/2024 at 3:26 PM, Nedast said:

“transitory erythrocytosis,”

New insights into erythropoiesis: the roles of folate, vitamin B12, and iron

 

On 3/30/2024 at 3:26 PM, Nedast said:

My D levels are at the top of the normal range in the warm months, and dip to the bottom of the normal range in winter.

That is normal. In Michigan you get very little UV from fall to spring.  What is your Normal range? It took taking 10,000 IU a day from April 2015 until September 2020 to get my vitamin D up to 80 ng/ml (200 nmol/L).  In 2018 it was still only 47 ng/ml I now range betwee 80 and 93 depending on how much sunshine.  Still taking the 10K but I skip days if I get out in the sun.  Doctors are taught that anything above 29 ng/ml is OK but at higher levels D keeps the autoimmune genes in check.

 

 

 

[Nedast]

@knitty kitty well, they are medically normal, at 60-70 nmol/L. Around December they fall to 40-50 nmol/L. Occasionally I supplement in winter, but I don’t worry about it too much since it only drops for a few months and the lower level doesn’t appear to give me physical or mental symptoms in that time. In spring, the level goes back up to medically normal. It may not be optimal, but I believe that is the level my body prefers to stay at. I get a lot of D in my diet from fish and fortified milk, which I finally managed to find with a gluten free label. Even if I get more sun than usual, my D level stays around 60-70 nmol/L in spring/summer/fall, and doesn’t go any higher. Personally, I don’t trust a lot of the people and studies recommending these higher, “optimal” levels of nutrients, in a lot of cases. The supplement industry is huge and highly unregulated at the moment, and is making a lot of money. I’m personally a big believer that the body will usually tell you when there’s something off, if you’re listening to it.

I stopped experiencing all symptoms after 2-3 months, but I continued to supplement for over a year, probably something like 16-18 months. I would not be surprised if low levels of certain B vitamins contributed to my eythrocytosis. I only know that it is associated with celiac disease, not how exactly it is caused. It could be that it was caused by stretch of malabsorption. B vitamin supplements did help the most out of all the supplements I took. Currently, I take magnesium daily, and iodine twice weekly, since I can not find gluten free iodized salt. I take vitamin E once a week. I track my macro and micro nutrients due to lifting weights, magnesium and vitamin E are the only nutrients that I consistently don’t get enough of in my diet.

Practicing proper posture, and physical therapy exercises, does help my joint stay stable when it has been correctly positioned via a bite splint, but it is inherently unstable now due to loss of all cartilage and soft tissue. I need professional help to set the joint, as these things aren’t enough on their own to set the joint if it has slipped and drifted out of socket.

Aside from the permanent destruction of my TMJ, I really do feel better than ever. And when I have my joint positioned correctly, I can convince myself that I’ve never had any of these problems. If my joint is positioned normally and stabilized, I feel completely normal, great, even. I have no signs of nutrient deficiency.

@Wheatwacked my normal range is in above reply

[Nedast]

@Wheatwacked @knitty kitty sorry, I meant ng/mL for D level measurement, can’t figure out how to edit post