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!

Upper Gi/ribcage Pain


pondy

Recommended Posts

SoyBoy Rookie

Thanks for your thoughts!

I am supplementing with B12 and D3 - that's it. My doctor did not check my B12 & Folate levels until I was already supplementing for about a month. So, I'm not sure if I was low in that department - probably though.

Is it safe to assume that if it is nerve damage from many years of malabsorbtion, it will resolve itself if I keep supplementing & living gluten free? I'd imagine so, but... ?

If it is nerve damage from malabsorbtion, it will resolve itself with supplementation as long as the damage isn't too extensive.

Ravenwoodglass mentions the numbness / tingling in the extremeties that comes with low B12. This is true and typical, however, I can tell you from personal experience that the nerve damage caused by malabsorbtion is not limited to the hands and feet. I had low B12 which caused nerve damage that extended from my lower back and wrapped around to my lower right rib cage. After supplementing with B12, the pain lessened significantly. I still have some very mild (not noticeable unless I press on the right area) pain in the same location almost two years later. However, please note that I let my pain go on for way too long (3 years +).

To add to the point that nerve damage is not limited to the extremeties, I also have residual nerve damage in the neck at the base of my skull.

Best of luck.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



  • Replies 89
  • Created
  • Last Reply
IrishHeart Veteran

I have nerve damage BODY wide. :blink:

My scalp, back, neck, trunk, backs of my legs, backs of my arms, FACE ---BURN. My hands and feet burning and tingling and numbness resolved FIRST, but I still have a lot of stuff going on.

My GI doc says he has never seen anyone with celiac manifest with symptoms as I have. He consulted two other GI docs and 2 neuros (I had already seen 3 myself :rolleyes: ) They all say it may not totally resolve, but I choose to think positively. My GI agrees with me---anything is possible and there is much they do not know about this thing. We're all walking lab rats in a way--and the medical world has much to learn from US.

Link to comment
Share on other sites
ravenwoodglass Mentor

If it is nerve damage from malabsorbtion, it will resolve itself with supplementation as long as the damage isn't too extensive.

Ravenwoodglass mentions the numbness / tingling in the extremeties that comes with low B12. This is true and typical, however, I can tell you from personal experience that the nerve damage caused by malabsorbtion is not limited to the hands and feet.

Teach me to post in a hurry :lol: , your quite right it is not limited to just extremeties. I also had a lot of other areas that were impacted by nerve damage including having difficulty swallowing. I did have the pins and needles in the extremeities first but not everyone would.

Link to comment
Share on other sites
ravenwoodglass Mentor

I have nerve damage BODY wide. :blink:

We're all walking lab rats in a way--and the medical world has much to learn from US.

If they would only listen.......

Link to comment
Share on other sites
IrishHeart Veteran

If they would only listen.......

Someday, soon they will. My new GI (not too far out of med school--maybe in his early 30's) represents a new crop of docs who are more celiac-savvy than the old school minds. Also, as more and more of us become vocal about it, and more people are DXed, all the old school thinking will change. The next generation will not suffer for their whole lives as so many of us did.

Fingers crossed, anyway. <_<

Link to comment
Share on other sites
pondy Contributor

Having an allergy to something is not the same as an intolerance. An intolerance to dairy would not show up on a scratch test the same as gluten intolerance won't. Deleting dairy hopefully will help with the pain. It is good that you have a new doctor and if things don't improve hopefully he will have some ideas.

It can be hard to find a soy and casien free butter replacement. I used Ghee for a while which is clarified butter but found out that real butter is also usually tolerated and I had no problems with it. If you go with a nondairy milk don't use Rice Dream, it may say gluten free but is processed with barley and many of us do react to it.

Thanks so much for the info!! I gotta say, I feel pretty stupid. :( It seriously never dawned on me to check out the difference between an allergy & an intolerance to dairy...

Well, I picked up some Silk Pure Coconut 'milk' & handed the cow products off to my housemate. Here's hoping in a few weeks or so the pain lightens up - that, or my new doctor is one of those more enlightened ones that Irish spoke about!

Link to comment
Share on other sites
pondy Contributor

.

Ravenwoodglass mentions the numbness / tingling in the extremeties that comes with low B12. This is true and typical, however, I can tell you from personal experience that the nerve damage caused by malabsorbtion is not limited to the hands and feet. I had low B12 which caused nerve damage that extended from my lower back and wrapped around to my lower right rib cage. After supplementing with B12, the pain lessened significantly. I still have some very mild (not noticeable unless I press on the right area) pain in the same location almost two years later. However, please note that I let my pain go on for way too long (3 years +).

To add to the point that nerve damage is not limited to the extremeties, I also have residual nerve damage in the neck at the base of my skull.

Best of luck.

You know, I do have periodic tingling in my extremities - but only on my left side. Not just tingling either - but severe pain that feels like it's deep down in the bones of my forearms, wrists, hips, knees! :( Couple times it woke me up from sound sleeps!

I've been seeing a 'Neuro-Chiropractor' for this. It usually helps.

My Chiro told me that I do have some nerve damage, and that it could very likely be due to years of malabsorbtion.

Funny that you mention the base of your skull - I've had it hurt in that general area also. It's like even the pillow & my hair hurt when I'm laying down. Weird stuff...

Probably all these pains of mine are a combination of lots of things going on. My body has been deprived of all the essentials - what do I expect?

On the upside, I'm hopeful about feeling better with time, supplementation, and now going dairy free. :rolleyes:

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



pondy Contributor

Someday, soon they will. My new GI (not too far out of med school--maybe in his early 30's) represents a new crop of docs who are more celiac-savvy than the old school minds. Also, as more and more of us become vocal about it, and more people are DXed, all the old school thinking will change. The next generation will not suffer for their whole lives as so many of us did.

Fingers crossed, anyway. <_<

Here Here!!!

Fingers and toes crossed!!! :rolleyes:

Link to comment
Share on other sites
IrishHeart Veteran

but severe pain that feels like it's deep down in the bones of my forearms, wrists, hips, knees! :( Couple times it woke me up from sound sleeps!

Funny that you mention the base of your skull - I've had it hurt in that general area also. It's like even the pillow & my hair hurt when I'm laying down. Weird stuff...

Oh Pondy, I have this same thing!!!!!!! DEEP bone pain all over and my face hurts just to lay my cheek on my pillow. My scalp and neck too...Horrible stuff! I recall you and I discussed this when you first came on the site. I had so hoped you had gotten some relief from this. This burning is insane, isn't it!

We'll just keep hanging in there, hon. I will too. And yes, give the no dairy thing a try. Let me know how you do!!!

Link to comment
Share on other sites
pondy Contributor

IrishHeart, It makes me really sad to hear that you know that pain also - I mean, I'm glad I'm not alone - but yes, it is truly awful.

You have a wonderfully optimistic attitude despite all you are going through - that's a gift & it is so refreshing!

Thank you for all of your support! I will hang in there as best I can & think healing thoughts for you!

Link to comment
Share on other sites
IrishHeart Veteran

IrishHeart, It makes me really sad to hear that you know that pain also - I mean, I'm glad I'm not alone - but yes, it is truly awful.

You have a wonderfully optimistic attitude despite all you are going through - that's a gift & it is so refreshing!

Thank you for all of your support! I will hang in there as best I can & think healing thoughts for you!

Right back at you!! Please let me know how you are doing and what the new doc tells you. Best wishes.

Link to comment
Share on other sites
Macbre Explorer

Please, I'm in need of some advice...

I am dealing with constant pain underneath/behind my ribcage.

It simply will not go away - even though I am careful in regards to diet and personal hygiene items.

The pain is typically localized to my right side. It is present 90 per cent of the time. It is best described as dull & achy. It's like a really bad toothache in my upper gut.

This is why my initial endoscopy was done (back in February). Biopsy revealed total villus

atrophy & I've been gluten free ever since.

My doctor said oh well, can't do anything about it. This makes me sad - I fear I'm not healing at all - and yet... blood tests show high B12 (1481), real high Folate, and normal D levels. As of June or so, my 'thyroid function' was within normal limits... just don't know why I still have this chronic pain in my side. I'm frustrated.

I will be getting a second opinion next month. Any ideas as to what sorts of tests - if any - I could ask for? Any ideas at all?

Thanks for reading, and for any & all input!

P.S.: I've posted about this in the past so I apologize for being repeating myself -

guess I'm just desperate for some more enlightenment. Can't get anywhere with my GI or regular doctor...

Thanks again,

Pondy

When I got diagnosed that was my main complaint. I didn't have any GI issues, it was a constant pain under my left ribcage. It did get better once I went gluten free, but it does come back when I get glutened. I do have heart palpations and chest pain on a regular basis, but I have POTS (postural ortostatic cardio syndrome)and it does get worse with glutening. Your pain should go away with time, but I've been gluten free for almost a year now and my ribcage pain disappeared after about 3 months. Maybe you are still getting gluten and don't realize it. I was getting glutened by my toothpaste and mouthwash and didn't realize it. You might want to look into your personal hygiene products to find out if you are being accidently glutened still. I hope it gets better for you....I know the pain you are dealing with. It used to wake me up in the middle of the night because it would be so bad. Good luck!

Link to comment
Share on other sites
pondy Contributor

Thanks for the support Macbre,

I just had to leave an outing with friends because of the pain. I'm laying here with a bag of frozen corn on my left ribcage. This feels just like old times - 10 months ago when it suddenly manifested. This is like "take your breath away" hurting.

I don't know what to do except try to just ride it out, so that's the plan for tonight... try to stay calm and wait... Tomorrow will hopefully be less intense.

I've been wanting to read up on POTS - I've seen posts here about it. Might be something else I could mention to my doctor.

Link to comment
Share on other sites
IrishHeart Veteran

Thanks for the support Macbre,

I just had to leave an outing with friends because of the pain. I'm laying here with a bag of frozen corn on my left ribcage. This feels just like old times - 10 months ago when it suddenly manifested. This is like "take your breath away" hurting.

I don't know what to do except try to just ride it out, so that's the plan for tonight... try to stay calm and wait... Tomorrow will hopefully be less intense.

I've been wanting to read up on POTS - I've seen posts here about it. Might be something else I could mention to my doctor.

Hon--- are you SURE you are not getting CCed somehow???

Also, has this area been X-rayed???

Link to comment
Share on other sites
pondy Contributor

Irish,

I don't know if I am getting cc'd - it's possible as I share a kitchen with a gluten eater, but we are both careful.

All I know is that I'm worse than yesterday - can't hardly move - can't get comfortable. I just feel ALL inflamed.

On a positive note, the really intense pain is intermittent. The constant pain is more livable - I'm used to it.

Link to comment
Share on other sites
pondy Contributor

Oh I forgot to mention that yes, it's been x-rayed. Nothing broken :)

Link to comment
Share on other sites
IrishHeart Veteran

Irish,

I don't know if I am getting cc'd - it's possible as I share a kitchen with a gluten eater, but we are both careful.

All I know is that I'm worse than yesterday - can't hardly move - can't get comfortable. I just feel ALL inflamed.

On a positive note, the really intense pain is intermittent. The constant pain is more livable - I'm used to it.

Gosh, you sound like me a few months ago. :( So sorry hon. And yes, we do get "used to it" (some ask me how the F*** I stand the pain I live in. I do not know--- as it is not fun at all.) I remain hopeful it will resolve.

Link to comment
Share on other sites
Heather Anne Newbie

I'm having the same pains, too. My new gastroenterologist told me that he believes it is from an ongoing small amount of gluten getting into my diet. I never had it before I was diagnosed. I'd been gluten-free for almost a year when it happened, with only a couple of accidental gluten exposures. It's only been in the last month. It got so bad that I went to the hospital. This prompted another endoscopy that showed healed villi but definite signs of irritation (?). He said he thinks I am one of those that are very sensitive and that I need to wait it out for the next two months without having any accidental glutening!

The pain is a combination of sharp (every time I eat) and dull/achey all of the time. It is under my left ribcage and can extend slightly below at times. It is horrible, so I completely understand! If you find anything else, please let us know!

Good luck!

Link to comment
Share on other sites
Beckyb70 Newbie

Please, I'm in need of some advice...

I am dealing with constant pain underneath/behind my ribcage.

It simply will not go away - even though I am careful in regards to diet and personal hygiene items.

The pain is typically localized to my right side. It is present 90 per cent of the time. It is best described as dull & achy. It's like a really bad toothache in my upper gut.

This is why my initial endoscopy was done (back in February). Biopsy revealed total villus

atrophy & I've been gluten free ever since.

My doctor said oh well, can't do anything about it. This makes me sad - I fear I'm not healing at all - and yet... blood tests show high B12 (1481), real high Folate, and normal D levels. As of June or so, my 'thyroid function' was within normal limits... just don't know why I still have this chronic pain in my side. I'm frustrated.

I will be getting a second opinion next month. Any ideas as to what sorts of tests - if any - I could ask for? Any ideas at all?

Thanks for reading, and for any & all input!

P.S.: I've posted about this in the past so I apologize for being repeating myself -

guess I'm just desperate for some more enlightenment. Can't get anywhere with my GI or regular doctor...

Thanks again,

Pondy

I have a has a feeling in my left side for a while, about five years now. I am now getting pains there, where before I would have described as you have and ache feeling.

I have not been diagnosed in regards to gluten but I am believing more and more that this could be the cause of SO many symptoms I've had over the past 5 years.

Please post if you learn anything that could cause this feeling. Mine is on my left side just at or behind the bottom rib.

Link to comment
Share on other sites
pondy Contributor

Quick little update here...

- after a couple days completely dairy free my pain lightened up (thanks to advice from wise & caring people here :)

- tried Lactaid milk yesterday & now have my old pain back. Note to self: lactose free isn't good enough ;)

- seeing my GI next week due to bowel change (flat ribbon thin bm since early November).

GI thinks the upper left pain is a pulled muscle or some such thing - maybe he thinks it's in my head. Whatever... I'm taking him OFF of my payroll ;)

- going for a 2nd opinion next week, so hopefully I can post something helpful after that...

I have been working really hard to get into a positive frame of mind - hoping that my body follows along!

Link to comment
Share on other sites
IrishHeart Veteran

Quick little update here...

- after a couple days completely dairy free my pain lightened up (thanks to advice from wise & caring people here :)

- tried Lactaid milk yesterday & now have my old pain back. Note to self: lactose free isn't good enough ;)

- seeing my GI next week due to bowel change (flat ribbon thin bm since early November).

GI thinks the upper left pain is a pulled muscle or some such thing - maybe he thinks it's in my head. Whatever... I'm taking him OFF of my payroll ;)

- going for a 2nd opinion next week, so hopefully I can post something helpful after that...

I have been working really hard to get into a positive frame of mind - hoping that my body follows along!

I sound like a broken record, I know, but Pondy, I am still thinking dairy

and possible CC. Having your pain lighten up is a clue.

The BM issue? take probiotics. Drink water and NO DAIRY, not even lactose free. (sorry hunny) Hang in there.

You know how we both have burny and sensitive skin and hurt all over? Read this article:

Open Original Shared Link

My hubs read it and said..babe, this sounds like you. <_<

Link to comment
Share on other sites
rosetapper23 Explorer

IrishHeart,

Yes, this article brought back memories....

But I have to tell you that parts of it made me wince. For one thing, the "expert" cited in the article considered celiac a rare disease. Second, he stated that false-positives are common with celiac disease (and, in this case, the patient tested positive THREE times!). :blink:

So, the "expert" was very proud of his diagnosis...a diagnosis that the first, second, third, etc., doctors should have recognized immediately. You and I could have made this diagnosis after a two-minute consultation with the patient. We should hang out a shingle! :D

...and thanks for the help with the Emoticons!

Link to comment
Share on other sites
pondy Contributor

Interesting article, Irish. Does sound familiar! ;)

I'm back on coconut milk for everything, so we'll see how it all shakes out. I agree with you about possible cc & dairy. Now that dairy is out, I'm on to the cc investigation.

I suspect a link between the upper GI pain and constipation - which I read somewhere that dairy products can cause. I plan to discuss it with the new doctor.

Question for you - any particular brand/type of probiotic you would recommend?

Thanks for all your help!

:)

Link to comment
Share on other sites
IrishHeart Veteran

IrishHeart,

Yes, this article brought back memories....

But I have to tell you that parts of it made me wince. For one thing, the "expert" cited in the article considered celiac a rare disease. Second, he stated that false-positives are common with celiac disease (and, in this case, the patient tested positive THREE times!). :blink:

So, the "expert" was very proud of his diagnosis...a diagnosis that the first, second, third, etc., doctors should have recognized immediately. You and I could have made this diagnosis after a two-minute consultation with the patient. We should hang out a shingle! :D

...and thanks for the help with the Emoticons!

You're welcome. ;)

We could have DXed her by just LOOKING at her (my Native American name is "She Who Sees Celiacs Everywhere") :lol: And yes, my friend....those were my very same objections to the article as well. Raised my objections on the thread where admin also posted the article-- and I had a good rant there as well. :rolleyes:

The implication was the doctor was "just amazing"....and the patient complied and got well because of him. HA! The article, BTW, was written by a......doctor. :P

Link to comment
Share on other sites
IrishHeart Veteran

Interesting article, Irish. Does sound familiar! ;)

I'm back on coconut milk for everything, so we'll see how it all shakes out. I agree with you about possible cc & dairy. Now that dairy is out, I'm on to the cc investigation.

I suspect a link between the upper GI pain and constipation - which I read somewhere that dairy products can cause. I plan to discuss it with the new doctor.

Question for you - any particular brand/type of probiotic you would recommend?

Thanks for all your help!

:)

CULTURELLE

I have tried several, and they worked okay for me, but after talking with my new, cool GI guy, he said this one is backed by studies at Tufts Univ. It did the trick --for me and for several others I suggested it to--for D and C! And yes, dairy (specifically, my beloved cheese) most definitely caused C, bloating and pain in me, not D.

Drink a LOT of water throughout the day. Start your day with 16 oz. of good old water. It will help move the bowels. I promise. Everyone thinks we need more fiber, more fiber...no, we need more water!!!

Good Lawd, I know waaaaay too much about poo..... :blink:

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Help Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - cristiana replied to Larzipan's topic in Related Issues & Disorders
      16

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

    2. - Julie Riordan replied to Julie Riordan's topic in Traveling with Celiac Disease
      3

      Any ideas for travelling

    3. - Nedast replied to Larzipan's topic in Related Issues & Disorders
      16

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

    4. - trents replied to SuzanneL's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Weak Positive Test

    5. - SuzanneL posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Weak Positive Test



  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,497
    • Most Online (within 30 mins)
      7,748

    Kim.cervone513
    Newest Member
    Kim.cervone513
    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

    • 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.
    • SuzanneL
      I've recently received a weak positive tTG, 6. For about six years, I've been sick almost everyday. I was told it was just my IBS. I have constant nausea. Sometimes after I eat, I have sharp, upper pain in my abdomen. I sometimes feel or vomit (bile) after eating. The doctor wanted me to try a stronger anti acid before doing an endoscopy. I'm just curious if these symptoms are pointing towards Celiac Disease? 
×
×
  • Create New...