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Larzipan

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

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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....    

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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

 

 

 

 

 

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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.

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