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We Need To Start A Thread On Stupid Stuff Doctors Say!


mushroom

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mushroom Proficient

:rolleyes: "We need to start a thread on stupid stuff doctors say! It would be hysterically funny." Skylark posted this in another thread. So I thought I would get it started.

I sleep with oxygen at night in Nevada because I start breathing really slowly and shallowly at night and my oxygen concentration in the bloodstream drastically drops and sends me into atrial fibrillation. So I get referred to the sleep unit in New Zealand when I get back, with all my U.S. records and supporting documents saying that BiPAP does not work, but that supplemental O2 does. They do their own SPO2 study, I go for consultation with the "sleep specialist", and this is what I get:

"If one puts the issue of the intermittent atrial fibrillation to one side, then currently we would not regard the provision of nocturnal oxygen as geing indicated in this case.:" And what does he recommend? The failed BiPAP. (And this, I believe, is due to a comment he made offhandedly, "We don't do that (nocturnal oxygen) here." )

So here we have a doctor putting aside the problem he was consulted for and trying to find a solution to another problem not at issue, which appears to be expelling CO2, which is the reason BiPAP doesn't work because I can't breathe out against it. and it makes me ill with crazy blood gases. Gahhhhhh. Bangs head against wall, after a night of atrial fib. and a ruined day recovering from it :rolleyes: Kill this guy :ph34r:

Liike all these cases, it is not funny, more sad than funny, but real. Sorry this one took so much explaining. Hope you hung in there :)

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Jestgar Rising Star

Doc brought food to a potluck meeting. Set down a bag of pita chips and said "these are gluten-free"...

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Bubba's Mom Enthusiast

After my DX of Cliac with severe villi flattening my insomnia and anxiety started to increase..rapidly. I asked my PCP to run a blood panel to see if I was low on some vitamin or mineral that might be causing my symptoms. She asked if I was taking a multi-vitamin and I said yes. She said "then it couldn't be a deficiency." :blink:

She also said she questions my DX because I'm too old at the age of 54 to just be getting Celiac!

I had a GI run a gene test. When he looked at the report he didn't know how to read it. He saw the alpha 1 and beta 1 with the additional alleles listed and since it didn't say DQ2 and DQ8 ONLY, he said it was negative. I'm actually a DQ2.2. We are more likely to have severe villi damage and complications from Celiac.

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IrishHeart Veteran

I'm actually a DQ2.2. We are more likely to have severe villi damage and complications from Celiac.

Not to interrupt the flow here, but me too! DQ2.2 and it is supposedly considered "rare"--about 1-2% of the celiac pop.?

I am wondering where you found that info??--- because I'd love to bring it to my new (very cool) GI--who said he has never seen celiac manifest with so many devastating symptoms as I have.

He is very gracious about accepting articles from me--in fact, he encourages it.:)

Can you point me to that info source?

thanks a bunch! :)

IH

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Bubba's Mom Enthusiast

Not to interrupt the flow here, but me too! DQ2.2 and it is supposedly considered "rare"--about 1-2% of the celiac pop.?

I am wondering where you found that info??--- because I'd love to bring it to my new (very cool) GI--who said he has never seen celiac manifest with so many devastating symptoms as I have.

He is very gracious about accepting articles from me--in fact, he encourages it.:)

Can you point me to that info source?

thanks a bunch! :)

IH

I needed the paper work right in front of me to compare what this article says. It lists the exact info my gene test results show.

http://en.wikipedia.org/wiki/HLA-DQ2

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IrishHeart Veteran

I have so many stupid doc stories, arrogant replies that would make you wince and say "what a jerk!" but the worst ones happened before my DX. I was desperate to have some relief from the nerve/joint/bone pain-- so I saw several rheumies and neuros and a pain management doctor with the empathy of a rock. "First do no harm"? Yeah, right! A few from my collection:

(1) March 2008 The rheumy examines me, cannot explain the burning pain, stiffness or tight, weakened muscles at all and when I ask him, "Since there are no medications that are helping, only causing horrible side effects, do you think if I were to use any supplements that reduce inflammation that it would help in any way?"

He replied with a mocking laugh: "Well, sweetheart, if you throw enough sh-t against the wall, eventually something might stick."

<_< Hubs wanted to punch his lights out.

(2) June 2008 The PM doctor looks at my spine films, barks "You have the spine of a 22 year old. It's not your spine." (I actually have osteopenia and several degenerating discs--but apparently, he cannot see them? The spine/ortho guys saw them plain as day)

I ask tearfully: "Then why am I unable to walk, sit, stand or lie down, turn my neck or lift things without excruciating pain?"

He says: "You probably have that fibromyalgia, even though I do not believe it even exists". :blink:

He goes on:" I can't help you. You need to do some yoga or take stress reduction classes. Why are you crying?"

Me: "I am in pain 24/7, I cannot sleep. It hurts just to lay down... and honestly, my father just died."

Him, standing up, signaling we are done now..." Oh, well, you are just grieving. I know, I also have a background in psychology. You need to relax, take some anti-depressants and chill out. I can't help you. I shoot up necks for a living." He left the room.

<_< Hubs wanted to punch his lights out.

(3) Nov. 2009 Another rheumy with a major god-complex tells me I need to take methotrexate because he believes I have "undifferentiated spondyloarthropy" even though I do not have the markers for the disease. :blink: I am so desperate, I consider it. I do have OA, so I thought maybe he knows better. But when I question him about the potential side effects of the drug, stating first "with all due respect...."he gets red-faced and yells at me "Well, that is NOT respectful at all. Are you questioning my 35 years experience? Do you think I would risk my reputation and give you something that would harm you? Do you know who I am???"

<_< Hubs wanted to punch his lights out.

(4)Dec. 2009 A woman doctor-PCP comes highly recommended to me-- takes my health history reads it, says the first doc I mentioned is the "best" and the third is a "quack". When I mention the burning pain I have, she says I am just stressed and writes a script for an anti-depressant, tells me to "relax, girlfriend", and come back in six months.

I ask:"but what about all the symptoms I told you about--the fatigue, my hair falling out, the constant abdominal pain, shortness of breath, diarrhea/constipation"?

She snarks back: "Well I can't solve all your problems for you. C'mon, time to go. I have other patients"

<_< I wanted to punch her lights out.

(5) Jan. 2010 I see an integrative MD for 9 months. When I ask him repeatedly about my hair failing out, he laughed and said, perhaps I was “jealous and I wanted to be like hubs”—referring to his bald head!" :o

About the continuing severe pain, numbness, tingling, burning and gait/ataxia issues, brain fog I had, despite all kinds of therapeutic treatments I paid for at his clinic--acupuncture, massage,supplements? (but balked at chelation treatments)

He said I needed to do volunteer work "to get my mind off the pain." WTF? :angry:

I could not even tie my own shoes or dress myself at the time. Turns out, I had dislocated SI joints, sacroillitis, piriformis syndrome, pelvic floor dysfunction, osteopenia, hypocalcemia, pudendal nerve entrapment, small nerve fiber neuropathy and L1-L2 nerve impingement. :unsure:

and finally....regarding the IgG food antibodies testing he did while I was already gluten-free because I was trying it to see if it would help?

He insisted to hubs and me--when I asked if it would affect the results he said REPEATEDLY--

"Oh, that will not affect the results of the test whatsoever!!!"

He told me it was perfectly safe to eat gluten--as it was not a high level. Just avoid soy because I had an intolerance to that.

Give it a few months and I would be right as rain.

I did that for another 9 months, going downhill so fast I nearly died.

<_< WE both want to punch his lights out and sue him and OWN his fancy clinic.

(6) Jan. 2010 A nurse practitioner in my former GI's office barked at me "It's not gluten! You do not have celiac sprue! you can eat gluten! He went down there last year (he did an endoscopy) and you are fine. You just have GERD! and IBS and probably fibro. Take the anti-depressants. Those are good drugs for fibro and take the Citrucel, carafate, and PPIs.... and take the methotrexate, too. Everyone is trying to help you but you don't take the drugs or listen to our advice. " I threw all the scripts in the wastebasket and never went back.

Well, as it turns out, "he"--the famous GI doc I saw for 12 years and who knew about my 90 lb. decline, labeling me "anorexic"--me, who was overweight for 10 years?--- never did the biopsy when he was "down there"! <_<

<_< Hubs and I--and my new GI doctor--- want to kill him.

<_<

There are a few more:

the Neuro in 2009 who said emphatically, the burning, numbness, poor reflexes, muscle mass loss, ataxia and loss of memory were not a "neurological issue because my EMGs and Brain MRI were okay"...and I should go back to the rheumatologist" :blink:

and... my very nice Primary Care guy who was so frustrated for all those years he could not help me figure it out but kept sending me here and there--- when I told him what I DID have (3 years later) he turned pale, flipped through my encyclopedia-sized chart like it was suddenly all so very clear and illuminated by the sun and said " OMG! That's it! of course! you need to be gluten free for life!".....

The kicker? His children have celiac, but as he put it "Wow, I did not know how it manifests in adults.".... :blink: :blink:

...there are more, but I am pooped from typing so long. :P

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Bubba's Mom Enthusiast

My report read

DQ alpha 1 01:03, 02:01

DQ beta 1 02:02, 06

So I have the DQ A*201 and DQ B1*202 that forms DQ2.2

Quotes from the article without the extra double-talk follows...

DQB1*0202This allele is linked to several DQA1* alleles, the linkage with DQA1*0201 forms the DQ2.2 haplotype

DQ2.2DQ2.2 is shorthand for the DQ α2β2 heterodimeric isoform. The isoform is encoded almost exclusively by the DQA1*0201:DQB1*0202 haplotype. The haplotype is linked to DR7. A small percentage of coeliac disease are associated with this haplotype, and some disease causing gliadins are presented by DQ2.2.

25% of celiacs are DQ2 homozygotes (HLA DQB1*02 homozygotes), only a small percent of these do not bear DQ2.5cis.[3] This minority are invariably DQA1*0201:DQB1*0202 (DQ2.2cis homozygotes).

Isoform pairings in DQ2.5/DQ2.2 results in two functionally unique isoform. The majority of DQ2 homozygotes are homozygotes of the DQ2.5 haplotype or DQ2.5 and DQ2.2 haplotypes. These DQ2 homozygotes tend to show increased mucosa damage and degradation and are at greatest risk for severe complications of coeliac disease, refractory disease, and enteritis associated T-cell lymphoma (EATL). Further information: DQ2.5, DQ2.2, DQ2 and coeliac disease, HLA DR3-DQ2

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IrishHeart Veteran

Okay, thanks. I have read this info already myself. I thought you had something else I could give him.

Let's not hijack this thread and go off topic too much :); we can pursue this on another thread or in a PM maybe? ;) okay?

IH

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Jestgar Rising Star

Fun related thread: top 5

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Skylark Collaborator

This is so funny! I'm glad you started it, Shroomie.

I asked my pretty good PCP about whether there are ways to lessen autoimmunity. He said "well the only thing I know of is to lower your stress level".

Gee, doc I wouldn't be STRESSED OUT if you could fix my dizziness, brain fog, and cognitive problems and refrain from pushing useless antidepressants. :blink:

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researchmomma Contributor

Our pediatric GI (the Celiac expert in our city) looked at my short, puberty delayed and skinny daughter and said "I can't get my head around all of her symptoms. Her blood work is negative so let's not waste time with a biopsy, let's just see if she has the genes. If no genes, it is not possible to have Celiac". I asked her about the negative IgA testing because her IgA is low and she said since it isn't deficient, the test is fine and negative.

Then she said, "Since she doesn't have Celiac, mostly likely, let's give her high dose prilosec for one year. This will tell me if I am on the right track". What track? The I don't know what to tell you if you aren't Celiac tract?

I get to go back this Thursday and see what she says about me not giving my daughter prilosec and taking her off gluten with great success. That wil be good. Oh and I will give her the high fecal fat report which proves that she is not absorbing nutrients just like the endocrinologist and I thought.

I am amazed that a Celiac specialist would actually say with complete conviction: if no genes, you cannot possibly have Celiac. Dr. Fasano even states that it is possible. Sheesh.

I am dreading that visit.

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researchmomma Contributor

IH, I think you take the cake (gluten-free of course) on this one. I am appalled at the ignorance and the lack of care.

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elizabethh Newbie

I have a good one! Just a little over a month ago I was at the doctor's office for the stomach flu, and he asked me about the celiac disease after seeing it on my chart so I just briefly explained to him what happens with that, then he says:

Doctor: "Wow you need to get that checked out, you have that really bad and you need to find out what's going on."

Me: "What do you mean?"

Doctor: "You have a severe case of it, other people do not have it as badly as you do."

Me(getting nervous and confused): "What exactly do you mean? I have it worse?"

Doctor: "Well when people have celiac disease they can't eat gluten while they're sick, but once their intestines heal then they can eat gluten again."

WHAAAAT?!

Totally never thought I would look at a DOCTOR, feeling like they are totally stupid. I spent like 15 minutes explaining to him how it really is and being in total shock that anyone could think/say that, much less a doctor! Omg!

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MitziG Enthusiast

"Oh honey, you don't want Celiac Disease. You can't have bread!" Oh, well then I guess I don't have it. Never mind this biopsy report....Duh.

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Kjas Newbie

My favourite one:

After me convincing my old doctor to spring me out of hospital as long as he took full responsibility for my care the conversion goes like this:

Doc: When they sent me the note they said you needed to get a psych test to see if you have an eating disorder.

Me: What the hell?

Doc: Apparently you refused to eat a lot of the food while you were there.

Me: Yeah cause I was throwing up and had D constantly, I would just throw up more food, what is the point? Plus she wants me to eat toast, and that's what started this thing when I first got admitted to the hospital. I told the nurse it makes me sick and she threatened me saying if I didn't eat, they'd make me do a psych test.

Doc: Toast makes you sick? Why don't you eat wheatbix or crumpets instead?

Me: Because they make me sick too?

Doc: Well I don't know what's wrong with you but in the meantime I'm going to run some autoimmune tests because one of your tests came back with the Ttg through the roof. In the meantime, take these steroids so you system will stop attacking itself and you have to get a psych test.

Me: Okay, so what do I eat in the meantime?

Doc: Pasta, cake, cookies, muffins, whatever will keep the weight on.

Me: That couldn't be causing the problems could it? When I was a kid I never ate anything like that stuff and I never had these problems.

Doc: Don't be silly, food can't make you sick. You probably just have an eating disorder and need an excuse to throw it up.

Me: I think I would know if I had one, I work with ED patients all the time at work. Besides how am I supposed to fake the Ttg or whatever it is?

Doc: You're probably in denial, just do the psych test.

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researchmomma Contributor

"Oh honey, you don't want Celiac Disease. You can't have bread!" Oh, well then I guess I don't have it. Never mind this biopsy report....Duh.

This made me laugh out loud.

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Di2011 Enthusiast

So did you do the psych test? I would have been tempted to experiment with a psychologist over this.

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researchmomma Contributor

My favourite one:

After me convincing my old doctor to spring me out of hospital as long as he took full responsibility for my care the conversion goes like this:

Doc: When they sent me the note they said you needed to get a psych test to see if you have an eating disorder.

Me: What the hell?

Doc: Apparently you refused to eat a lot of the food while you were there.

Me: Yeah cause I was throwing up and had D constantly, I would just throw up more food, what is the point? Plus she wants me to eat toast, and that's what started this thing when I first got admitted to the hospital. I told the nurse it makes me sick and she threatened me saying if I didn't eat, they'd make me do a psych test.

Doc: Toast makes you sick? Why don't you eat wheatbix or crumpets instead?

Me: Because they make me sick too?

Doc: Well I don't know what's wrong with you but in the meantime I'm going to run some autoimmune tests because one of your tests came back with the Ttg through the roof. In the meantime, take these steroids so you system will stop attacking itself and you have to get a psych test.

Me: Okay, so what do I eat in the meantime?

Doc: Pasta, cake, cookies, muffins, whatever will keep the weight on.

Me: That couldn't be causing the problems could it? When I was a kid I never ate anything like that stuff and I never had these problems.

Doc: Don't be silly, food can't make you sick. You probably just have an eating disorder and need an excuse to throw it up.

Me: I think I would know if I had one, I work with ED patients all the time at work. Besides how am I supposed to fake the Ttg or whatever it is?

Doc: You're probably in denial, just do the psych test.

My family is in bed and I am up reading stuff on the computer WITH a glass of red wine because it is Saturday night. So, I just have to say that this is another Abbot and Costello conversation. Just insanity. A book could be written about the absolute absurdity of it all.

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Kjas Newbie

diandliam,

I am a psychologist which is what made that statement so ironic. I would know if I had an eating disorder because I work with these girls and the occasional boy everyday because they have eating disorders. The test came up with that I do not have an eating disorder along in the past I have had periods of disordered eating, mainly due to the celiac.

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IrishHeart Veteran

"Oh honey, you don't want Celiac Disease. You can't have bread!" Oh, well then I guess I don't have it. Never mind this biopsy report....Duh.

wow, Mitzi..... doc says you're "good to go" then! Have a donut.

:rolleyes:

OY

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upwitht21 Rookie

Dr insists I'm severely depressed and needed an antidepressant......just found out I'm pregnant, so anyone think my fatigue is depression related lol!

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IrishHeart Veteran

Dr insists I'm severely depressed and needed an antidepressant......just found out I'm pregnant, so anyone think my fatigue is depression related lol!

congrats! and nope! best wishes!

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Adalaide Mentor

Oh gosh, I'm getting paranoid. My next appointment is tomorrow! So far though in three years this doc hasn't said anything monumentally stupid to me.

On the other hand, plenty of doctors have. The most memorable was an ortho. I fell at work straight onto my knees, on a concrete floor. (I didn't drop the pizzas and they were fine to go out to the customers!) After about a month of physical therapy, drugs and a half dozen visits to the doctor I got referred to an ortho. He told me to continue with PT even though it was agonizingly painful. After another month or so when I went back and told him it's worse instead of better he told me that I was just being "too sensitive" and to learn to get over it since my MRI didn't show any real damage. I do no know how I got out of there without decking the guy.

I promptly requested a new doctor. The new doctor reviewed all my records, scheduled surgery and in no time my knee felt about as good as the rest of me. He said there was some minor damage with some "junk" floating around in my joint which is why it always felt like I had shards of glass whenever I moved my leg.

Too sensitive my fat a...... I still want to punch that guy.

The only other doctor who really made me angry was one who told me in the ER on a evening when my gallbladder decided to act up that I should stop coming into the ER for pain relief and just have surgery already. "The ER isn't a drug dispensary." This is after I explained that I was having trouble with my insurance paying for the surgery and had no other options. I was also already high as a kite from percocet when I went in and was still in so much pain I was lucky I could walk.

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IrishHeart Veteran

So far though in three years this doc hasn't said anything monumentally stupid to me.

YET :lol:

(sorry, I am a tad "jaded"-- to say the least)

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    • 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? 
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