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Tbolt47

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Tbolt47 Newbie

I had a positive blood test for Celiac's  in the late fall of 2012 . Biopsy confirmed Celiac late December. The symptoms that brought me to my GP were as follows: intense pain on my right abdominal  side  , joints ached, moderate headache on left side ,chronic  loose stool, bloating and distenuated stomach, extreme fatigue, insomnia and I truly had  a very difficult time articulating my thoughts or finishing a sentence. One of the most profound changes was my mental health. Normally very sure of my decisions, I could not make one, and procrastinated. I become frustrated with nearly every normal daily activity. Every email needed to be read several times to comprehend, focusing during a conversation was impossible, I did not have the mental energy to execute simple directions to prepare a meal.

 

I started the Gluten Free diet prior to Xmas 2012. My success with this followed a slow learning curve. Eventually, my headache, joint pain , abdominal pain and insomnia were the first symptoms to gradually dissipate. I know I have inadvertently eaten gluten, the above symptoms return, although not with the same intensity.

 

I am 6.5 months into gluten-free however my mental acuity has not returned, and an unexplained underlying anxiety has replaced my normal personality. For the past 6 months,  I have exposed myself to 98-99 % less gluten than prior to my diagnosis. However, I am constantly exhausted, exercise( I run 20-25 miles a week for the past 35 years) use to elevate my mood and sharpen my focus, now it just fatigues me.

 

 

I  learned early on, I cannot eat at a restaurant, no matter the claim of being " Gluten Free ". Nor anyone else's cooking even though they make the same claim. Is it too early in the " healing process " too expect to feel better? I am moving in the right direction regarding the relief of my physical symptoms, however   mentally  I feel very dull and anxious .

 

My 6 mo. blood work number below:

IGA=17

IGG=8

TTG/IGA=48

TTG/IGG=7

 

 

 

 

 

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dilettantesteph Collaborator

It is still pretty early in the healing process.  My neurological symptoms took longer to heal.  Have you considered a produce and unprocessed meat diet?  That was helpful for me.  The fact that you had problems with eating at restaurants might indicate that you are more sensitive to cc than average.

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Tbolt47 Newbie

It is still pretty early in the healing process.  My neurological symptoms took longer to heal.  Have you considered a produce and unprocessed meat diet?  That was helpful for me.  The fact that you had problems with eating at restaurants might indicate that you are more sensitive to cc than average.

I have not thought about a " unprocessed meat and produce " diet. I certainly would consider it. I appreciate your insight. I have kept a food journal, however, it is difficult to pin down what the offending food(s).

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notme Experienced

it is pretty early on, especially if you had been having symptoms left untreated for a long time.  i had this for 25 years, untreated, so i figure it's going to take awhile.  your nerves have to heal, too.  i'm 3 years in and still noticing improvement.  i don't eat alot of processed foods but i do eat some - the less ingredients, the better - food journal is always a good idea when you're trying to figure things out.  are there any times when you're feeling 'clearer' than others, or vice-versa?  it's boring, but you could do an elimination diet?

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Tbolt47 Newbie

it is pretty early on, especially if you had been having symptoms left untreated for a long time.  i had this for 25 years, untreated, so i figure it's going to take awhile.  your nerves have to heal, too.  i'm 3 years in and still noticing improvement.  i don't eat alot of processed foods but i do eat some - the less ingredients, the better - food journal is always a good idea when you're trying to figure things out.  are there any times when you're feeling 'clearer' than others, or vice-versa?  it's boring, but you could do an elimination diet?

Hello notme, It is good to hear you are moving in the right direction . You have given me pause for thought regarding the length of time I may have been unknowingly doing damage. A good number of years ago I received a diagnosis of  "Irritable bowel syndrome ". Also, I have seen a Dermatologist for what I now believe to have been Dermatitis Herpetiformis(the diag. was unexplained blistering rash) over the past several years. Since gluten-free I have not had DH for the first time in years. It is likely I have had Celiacs for a considerable time with moderate symptoms.

My wife cooks during the week and I cook on the week ends. We have simplified this considerable, but not to the point of just produce and meat or no processed foods. However, this may be what is necessary as suggested.

 

In the past 6 months there have been 3 occasions where  I have had wine with a dinner I or my wife prepared. My body reacted as if had consumed  large quantity's of gluten.  I had two glasses of wine which had absolutely no intoxicating effect. However, in each instance the symptoms lasted a week.

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GFinDC Veteran

Hi Tbolt,

 

Six months is pretty early to be symptom free.  But that doesn't mean it isn't worth trying for! :)  A simple diet is very helpful at first.  No processed foods or only safe processed foods.  A few things I consider safe are Mission brand corn tortillas, Corn Thins,  Food Should Taste Good Chips (gluten-free).  Frozen foods are safer than canned foods often, and healthier too.  Look for foods with 3 or less ingredients on the label.  Organic and non-GMO foods are better if you can find them.

 

Adding some vitamin pills may help.   I think it is better to add individual vitamins rather than the kitchen sink type multi-vitamins.  B-vitamins are important for us.

 

I don't drink wine myself because I react to grapes.  Some people react to the sulfites in wines.  Red wines are generally more of problem for sulfites than white wines.

 

I've been experimenting with taking creatine lately myself.  So far it seems to help my energy level and my thinker thing.

 

Helpful threads:

FAQ Celiac com
https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
https://www.celiac.com/forums/topic/91878-newbie-info-101/

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notme Experienced

Hello notme, It is good to hear you are moving in the right direction . You have given me pause for thought regarding the length of time I may have been unknowingly doing damage. A good number of years ago I received a diagnosis of  "Irritable bowel syndrome ". Also, I have seen a Dermatologist for what I now believe to have been Dermatitis Herpetiformis(the diag. was unexplained blistering rash) over the past several years. Since gluten-free I have not had DH for the first time in years. It is likely I have had Celiacs for a considerable time with moderate symptoms.

My wife cooks during the week and I cook on the week ends. We have simplified this considerable, but not to the point of just produce and meat or no processed foods. However, this may be what is necessary as suggested.

 

In the past 6 months there have been 3 occasions where  I have had wine with a dinner I or my wife prepared. My body reacted as if had consumed  large quantity's of gluten.  I had two glasses of wine which had absolutely no intoxicating effect. However, in each instance the symptoms lasted a week.

yes - 'ibs' - here's a pill, eat more fiber (whole wheat!), you have a rash, here's some cream....  not to mention every other thing that was wrong and probably attributed to this sneaky disease!

 

i was already simplifying my diet trying to figure out what was killing me, but *bread* was never a suspect - innocent looking i guess lolz - so, making the shift to more unprocessed foods (just no gluten) was not too hard.  i still eat packaged bread and pasta, but almost everything else is from scratch.  

 

i find that alcohol is a whole different animal now that i am healing.  i find myself cutting it out more and more (and i likes my beer!) but it seems to be more of a nuisance than a treat lately.  i may change my mind later   <_<

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Tbolt47 Newbie

Hi Tbolt,

 

Six months is pretty early to be symptom free.  But that doesn't mean it isn't worth trying for! :)  A simple diet is very helpful at first.  No processed foods or only safe processed foods.  A few things I consider safe are Mission brand corn tortillas, Corn Thins,  Food Should Taste Good Chips (gluten-free).  Frozen foods are safer than canned foods often, and healthier too.  Look for foods with 3 or less ingredients on the label.  Organic and non-GMO foods are better if you can find them.

 

Adding some vitamin pills may help.   I think it is better to add individual vitamins rather than the kitchen sink type multi-vitamins.  B-vitamins are important for us.

 

I don't drink wine myself because I react to grapes.  Some people react to the sulfites in wines.  Red wines are generally more of problem for sulfites than white wines.

 

I've been experimenting with taking creatine lately myself.  So far it seems to help my energy level and my thinker thing.

 

Helpful threads:

FAQ Celiac com

https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

Hello DC,

 

Thanks for the pointers. I take a Multi-Vitamin and a Probiotic, have seen others mention a digestive enzyme ?  I am eating more fruit than prior to my diagnosis but that is mostly mind over matter, not really enjoying it.  I like the Mission brand corn tortilla better than any of the gluten-free bread I have had.

I have noticed,even the certified gluten-free oatmeal gives me trouble. For the most part my diet consists of meat, rice, beans and eggs and various vegetable's.

I use cheese to add variety . I do eat gluten-free chips , pretzels and nuts for snacks.

I have given up on wine, red or white neither one works for me.

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ruthie-ray Newbie

I had a positive blood test for Celiac's  in the late fall of 2012 . Biopsy confirmed Celiac late December. The symptoms that brought me to my GP were as follows: intense pain on my right abdominal  side  , joints ached, moderate headache on left side ,chronic  loose stool, bloating and distenuated stomach, extreme fatigue, insomnia and I truly had  a very difficult time articulating my thoughts or finishing a sentence. One of the most profound changes was my mental health. Normally very sure of my decisions, I could not make one, and procrastinated. I become frustrated with nearly every normal daily activity. Every email needed to be read several times to comprehend, focusing during a conversation was impossible, I did not have the mental energy to execute simple directions to prepare a meal.

 

I started the Gluten Free diet prior to Xmas 2012. My success with this followed a slow learning curve. Eventually, my headache, joint pain , abdominal pain and insomnia were the first symptoms to gradually dissipate. I know I have inadvertently eaten gluten, the above symptoms return, although not with the same intensity.

 

I am 6.5 months into gluten-free however my mental acuity has not returned, and an unexplained underlying anxiety has replaced my normal personality. For the past 6 months,  I have exposed myself to 98-99 % less gluten than prior to my diagnosis. However, I am constantly exhausted, exercise( I run 20-25 miles a week for the past 35 years) use to elevate my mood and sharpen my focus, now it just fatigues me.

 

 

I  learned early on, I cannot eat at a restaurant, no matter the claim of being " Gluten Free ". Nor anyone else's cooking even though they make the same claim. Is it too early in the " healing process " too expect to feel better? I am moving in the right direction regarding the relief of my physical symptoms, however   mentally  I feel very dull and anxious .

 

My 6 mo. blood work number below:

IGA=17

IGG=8

TTG/IGA=48

TTG/IGG=7

Hi.  I suggest that instead of going 98-99 % gluten free that you go 100% gluten free.  I am only 3 + months into this, but have noticed many symptoms go away and the "Mental Fog" go away.  One thing to consider...do you also drink/eat aspartame products.  Prior to my celiac diagosis, I went off of diet soda and that signficantly improved my mental clarity.  I would suggest that if you consume aspartame products.  It actually made a huge difference in my professional life, as while on diet soda, I was only working with 1/2 a brain.  If you are not on aspartame, then try 100% gluten-free, and perhaps go on a raw diet for a few weeks and see if it helps you get out of the funk.  Water, Water Water.  Good luck.

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kareng Grand Master

Hi.  I suggest that instead of going 98-99 % gluten free that you go 100% gluten free.  I am only 3 + months into this, but have noticed many symptoms go away and the "Mental Fog" go away.  One thing to consider...do you also drink/eat aspartame products.  Prior to my celiac diagosis, I went off of diet soda and that signficantly improved my mental clarity.  I would suggest that if you consume aspartame products.  It actually made a huge difference in my professional life, as while on diet soda, I was only working with 1/2 a brain.  If you are not on aspartame, then try 100% gluten-free, and perhaps go on a raw diet for a few weeks and see if it helps you get out of the funk.  Water, Water Water.  Good luck.

Just to clarify to someone who might read this:

Aspartame is gluten free.

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Tbolt47 Newbie

Hi.  I suggest that instead of going 98-99 % gluten free that you go 100% gluten free.  I am only 3 + months into this, but have noticed many symptoms go away and the "Mental Fog" go away.  One thing to consider...do you also drink/eat aspartame products.  Prior to my celiac diagosis, I went off of diet soda and that signficantly improved my mental clarity.  I would suggest that if you consume aspartame products.  It actually made a huge difference in my professional life, as while on diet soda, I was only working with 1/2 a brain.  If you are not on aspartame, then try 100% gluten-free, and perhaps go on a raw diet for a few weeks and see if it helps you get out of the funk.  Water, Water Water.  Good luck.

Hello Ruth,

I believe you  misread my post. Like most folks, on occasion I have inadvertently eaten  "gluten", therefore not 100% gluten free.  I do not drink soft drinks diet or otherwise.

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GFinDC Veteran

 

 

Hi Tbolt,

 

You are welcome for the pointers.  We all like to help each other out on the forum with getting started on the gluten-free diet.  It's something we all had to learn.

Digestive enzymes may help.  They are made by the pancreas and stomach.  But with celiac the digestive system is kind of thrown out of whack and some things may not work normally.  So a little digestive help can be beneficial.

 

Some people find Betaine HCL helpful.  It creates stomach acid.  There are many kinds of digestive enzymes on the market.  If you have a health food store near you it might help to ask them for recommendations.  Just be sure any pills you get are gluten-free.

 

Planters is a good company for nuts.  They will label any gluten.

 

I can't eat oats either, even the gluten-free certified ones.  They give me reactions just like gluten does.  Do you react to grapes or raisins?  Just curious, cause that would be a good thing to know.  Grape juice is used as a sweetner in some gluten-free products.

 

Veggies are great, but be sure to wash them before cooking.    Just a quick rinse can be helpful.  I rinse veggies before using them, even mushrooms.

 

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Tbolt47 Newbie

Hi Tbolt,

 

You are welcome for the pointers.  We all like to help each other out on the forum with getting started on the gluten-free diet.  It's something we all had to learn.

Digestive enzymes may help.  They are made by the pancreas and stomach.  But with celiac the digestive system is kind of thrown out of whack and some things may not work normally.  So a little digestive help can be beneficial.

 

Some people find Betaine HCL helpful.  It creates stomach acid.  There are many kinds of digestive enzymes on the market.  If you have a health food store near you it might help to ask them for recommendations.  Just be sure any pills you get are gluten-free.

 

Planters is a good company for nuts.  They will label any gluten.

 

I can't eat oats either, even the gluten-free certified ones.  They give me reactions just like gluten does.  Do you react to grapes or raisins?  Just curious, cause that would be a good thing to know.  Grape juice is used as a sweetner in some gluten-free products.

 

Veggies are great, but be sure to wash them before cooking.    Just a quick rinse can be helpful.  I rinse veggies before using them, even mushrooms.

 

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Good Evening DC,

No problem with raisins, I cannot recall the last time I had a grape. I do eat the gluten-free trail mix sweetened with grape juice without a problem.

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Tbolt47 Newbie

yes - 'ibs' - here's a pill, eat more fiber (whole wheat!), you have a rash, here's some cream....  not to mention every other thing that was wrong and probably attributed to this sneaky disease!

 

i was already simplifying my diet trying to figure out what was killing me, but *bread* was never a suspect - innocent looking i guess lolz - so, making the shift to more unprocessed foods (just no gluten) was not too hard.  i still eat packaged bread and pasta, but almost everything else is from scratch.  

 

i find that alcohol is a whole different animal now that i am healing.  i find myself cutting it out more and more (and i likes my beer!) but it seems to be more of a nuisance than a treat lately.  i may change my mind later   <_<

Hello notme,

There is something very sinister when something as wholesome as bread becomes poisonous. Certainly brings new meaning to " one man's meat is another man's poison. "

I am from the Chicagoland area where deep dish pizza is almost a religion. Nothing better to have an ice cold beer with....I understand your loss.

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pricklypear1971 Community Regular

Many of us go into an exhaustion phase after going gluten-free. The whole dx of celiac is pretty shocking, the adjustment can be stressful (despite the rewards)...

Have you had vitamin/ mineral levels checked: iron, d, b's?

Have you been screened for other AI diseases like Hashimoto's thyroiditis?

For some reason, going gluten-free seems to resemble ripping the scab off a cut only to find its infected. Removing the scab was good - revealed the problem, but now the cut needs to be cleaned and treated to heal... Turns out to be an ugly process, pretty painful, and you discover there's more to it than just a cut with a scab.

My point is that since Celiac is an autoimmune disease, it's part of a bigger picture. It isn't just food, it isn't just isolated damage in your intestines. Your body has been under an attack EVERYWHERE.

Exhaustion is normal. You may have another condition to deal with. You may need vitamins. You may have an additional intoletance. You may be getting cc'd. You may just need time to heal.

I'd try slowing down in the jogging and see what happens. It may be too much right now. I'd ask for vitamin/mineral tests as well as thyroid testing. I'd double check all of my food, utensils, body care, meds for gluten, I'd keep a food diary. I'd read about other AI conditions and see if any ring a bell...you never know.

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w8in4dave Community Regular

Wow I am just a few weeks in and I think your doing wonderful!! I hope to feel like I could run in 6 months!!  Even if I am exhausted afterward just the gumption to get up and do it would be good enuf for me!! 

I do think there are hidden Gluten in alot of things!! I am not sure how to go 100% gluten free!! I thought I was 100% gluten free but then live and learn!! But like I said I am only a few weeks into it!

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Tbolt47 Newbie

Wow I am just a few weeks in and I think your doing wonderful!! I hope to feel like I could run in 6 months!!  Even if I am exhausted afterward just the gumption to get up and do it would be good enuf for me!! 

I do think there are hidden Gluten in alot of things!! I am not sure how to go 100% gluten free!! I thought I was 100% gluten free but then live and learn!! But like I said I am only a few weeks into it!

Hello w8in4dave,

I would encourage activity/exercise, going for walks if at all possible. Prior to my diagnosis, and when beginning the gluten free diet. I was exhausted ( still unusually tired) but I had a difficult time falling asleep, and only slept for a few hours. I never felt refreshed . As I  forced myself to get back to my exercise routine. I began to fall asleep quicker and stay asleep longer. Still not good in this aspect but better.

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w8in4dave Community Regular

Hello w8in4dave,

I would encourage activity/exercise, going for walks if at all possible. Prior to my diagnosis, and when beginning the gluten free diet. I was exhausted ( still unusually tired) but I had a difficult time falling asleep, and only slept for a few hours. I never felt refreshed . As I  forced myself to get back to my exercise routine. I began to fall asleep quicker and stay asleep longer. Still not good in this aspect but better.

Tbolt47

I do exercise , I walk, I cannot run, But I try to walk every day!! 1 to 2 miles a day depending , and I am exhausted when I do it!! before I do it! Even if I could run I just wouldn't have the gumption!! 

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Tbolt47 Newbie

Tbolt47

I do exercise , I walk, I cannot run, But I try to walk every day!! 1 to 2 miles a day depending , and I am exhausted when I do it!! before I do it! Even if I could run I just wouldn't have the gumption!! 

w8in4dave,

I certainly know the feeling, I actually felt worse, for a time , when I initially stopped eating gluten. I have been running for so many years it almost like a " compulsion " to continue.  It is great that you walk.

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w8in4dave Community Regular

Ty :) I think it is great that you run!! I had surgery on my leg, it is crooked now! They told me I was lucky to walk let alone run!! Said I'd have a limp all my life! Well no limp , I go up and down stairs, They said I'd prob never be able to do that! Altho I cannot run I do walk , just to prove them wrong!! :) 

 

My oldest Daughter is a runner!! She loves it!! She just had a baby he just turned 3 months old!! She ran almost to the time of delivery , but not quite! Lol ....   she just started running again about a month ago!! It was hard for her to start again! But she has it again!! She is so happy now!! You remind me of her when you talk about running!! Great attitude keep it up!! 

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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.
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