Crohn's Disease Forum » General IBD Discussion » 75% of Crohn's also have debilitating TMJ

01-17-2013, 10:39 PM   #1
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75% of Crohn's also have debilitating TMJ

Something to consider: 75% of people with severe allergies or auto-immune disorders, including Crohn's, also have problems with TMJ.

And most people don't know it but TMJ can cause really horrible symptoms like brain fog and chronic fatigue, screwy vision, balance issues, neck/face/jaw pain, etc.

The reactions that the body is having cause the muscles in your shoulders neck, jaw and head to contract and this causes the TM Joint to press on the trigeminal nerve and that causes all kinds of trouble including stopping signals to the brain that tell the brain to produce neurotransmitters and if you are low on these neurotransmitters then horrible symptoms are the result.

Dr. Klemons is likely the world's foremost expert on this topic. He is located in NJ, but he has a network of jaw specialists that are like minded, and he can refer you to one close to you.

I would call his office and ask. I was able to speak with him directly on the phone and he referred me to one of his like minded colleagues on the other side of the USA closer to myself.

I might warn you guys that not all TMJ doctors are good. You really should contact Dr Klemons for a referral.

If you happen to be in the middle of the USA, then you can see or call:
Dr Robert Talley
Craniofacial Pain, TMJ and Sleep of Oklahoma
448 36th Ave. N.W., Suite 103
Norman, Oklahoma 73072
Phone: 405.321.8030

You might also like to read this book...again by a dentist /jaw specialist explains the issue and also provides a number of self therapy options

The basic therapy from one of these dentist jaw specialists, is to give you a set of two mouthpieces, one on top and one on bottom. These mouthpieces only allow your front teeth to touch. Your brain won't press hard on those front teeth for fear of breaking them, and so your brain tells those jaw/neck/face muscles to relax. It takes a couple weeks for your brain and muscles to fully respond, but the relief is almost immediate.

One last thing....I mentioned LDA Immunotherapy by Dr Shrader in another thread...there are links to LDA physicians nationwide

In the UK LDA is known as EPD and I believe it is available on the NHS

Taking LDA (EPD) will dramatically loosen your jaw / neck /face and upper back muscles...or at least that has been my personal experience.

My doctor likes to use LDA Immunotherapy (EPD) and LDN (low dose naltrexone) together.

I take both LDA Immunotherapy (EPD) and LDN (low dose naltrexone).

The LDA immediately gave me tremendous relief from pain in my back, neck, jaw, and face too. And then a couple months after beginning LDA (EPD), I started LDN (low dose naltrexone) and this again loosened all those muscles and markedly reduced my pain.

This loosening not only almost totally eliminated pain, but it also dramatically improved my vision and balance. The theory is that the tight muscles in your neck/jaw/face pull on tiny little muscles inside your ear and these control your balance as well as some part of your vision. TMJ is well known for also causing eye ball and face pain.
01-18-2013, 12:25 AM   #2
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Sorry but what is TMJ
01-18-2013, 01:45 AM   #3
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Temporomandibular joint disorder - pain or inflammation of the joint that connects the mandible (jaw bone) to the skull. I have it to some degree - it causes me headaches - and my chiropractor, who is a specialist in craniopathy (treating head/skull related problems), treats me for it.
Crohn's Disease - symptoms since c1955, diagnosed early 1970s. On Prednisolone until...
Total Proctocolectomy in 2000.
Ileostomy that behaves most of the time
Currently on no medications, but under constant gaze of very caring GP, with annual blood and other tests.
01-18-2013, 02:08 AM   #4
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Wish I had read this before yesterday. I was at the hospital yesterday with this. Where did you get the figure of 75% of crohns patients? Thanks for all the info xxx

Crohn's diagnosed 2010
Ileostomy 2011.
Completion Proctectomy 2012
01-18-2013, 02:18 AM   #5
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This might explain the weird headaches and feelings in my head lately
01-18-2013, 04:44 AM   #6
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can you give us the reference to this please? 75% is high and i wouldnt mind reading it from the source. thanks.
"Proactive 34 yr-old Female

Diagnosis - Crohn's colitis & Pancolitis 2009-current, 97-09 UC, Osteoporosis, controlled anemia with iron infusions

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01-18-2013, 10:01 AM   #7
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I'm with crushingcrohns, I'd love to read more about this Could you provide us with a reference please?
It's good to be back
01-18-2013, 10:08 AM   #8
Join Date: Jan 2013
Location: Stillwater, Oklahoma
You bet...the reference comes from the following book by Dr. Uppgaard

Taking Control of TMJ: Your Total Wellness Program for Recovering from Temporomandibular Joint Pain, Whiplash, Fibromyalgia, and Related Disorders

My own personal jaw specialist (TMJ specialist) told me that the percentage of his patients, in his 40 years of practice, with severe allergies or some auto-immune disorder, was in the 90% range. It's just nearly universal that the muscles of the neck/jaw/face will become more tense and eventually more toned as a result of any auto-immune disorder. This tension and toning of those muscles will eventually cause the jaw bone to jam into some nerve complex which can cause a wide range of crazy and horrible symptoms.

Some, mostly women, will have a widening of their face due to the building up of the mandibular muscles. More progressive doctors are also using Botox to treat TMJ. The Botox temporarily paralyses those facial muscles, which in effect retrains the brain to relax those muscles, very similar to the mouthpiece method mentioned in a previous post.
01-18-2013, 10:24 AM   #9
Join Date: Jan 2013
Location: Stillwater, Oklahoma
I might also mention another couple books that greatly helped me eliminate a good deal of pain:

The Trigger Point Therapy Workbook: Your Self-Treatment Guide for Pain Relief

And if you are interested in reading the 2 volume medical textbook on which the workbook above is based: (warning it's extremely long and tedious, but fun to flip thru)

Travell & Simons' Myofascial Pain and Dysfunction: The Trigger Point Manual
01-18-2013, 11:47 AM   #10
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I went to one dentist who immediately wanted to do work on me because he said I have TMJ. I have not heard my other dentist or oral surgeon ever say this to me so I am not sure if he was lying to make a buck. Is there a way to self diagnose? I have a lot of these symptoms anyway but they might be unrelated.
01-18-2013, 12:19 PM   #11
Join Date: Jan 2013
Location: Stillwater, Oklahoma
@nogutsnoglory....I love Weston Price too!

All TMJ doctors are not the same. So it's true that you do need to be discerning in your selection of a jaw specialist.

To that end, I would highly recommend that you call and get a recommendation from either:

Dr. Klemons
Dr Robert Talley
Craniofacial Pain, TMJ and Sleep of Oklahoma

Both of these dentists are leading experts, they teach at medical schools and conferences around the world, they both have been in private practice for more than 40 years, and they have a network of like minded dentists across the USA and probably around the world as well.

I learned a lot about my own condition by reading the testimonials here

And the book by Dr Uppgaard has a list of 50 or so symptoms on pages 21-27 that help one self diagnose. TMJ can be a misleading word, as many think TMJ is more an annoyance than a debilitating disorder. It is far more than a clicking of the jaw.

Dr. Uppgaard bases a good deal of his book on the aforementioned medical text book by Travell and Simons and so he uses more appropriate and dangerous sounding words such as:

"Myofacial Syndrome and Craniofacial pain and Craniomandibular pain syndrome and Myofascial Pain and Dysfunction and Trigger Points"

On page 22 Dr Uppgaard has a chart that shows how the symptoms of TMJ compound and escalate over the course of time. When you are 15-18 you might experience a popping sound in your jaw and some headaches from time to time and maybe some ringing in your ears, but left untreated by the time you reach 50-60 years of age the symptoms can look like this:

Headaches - continuous and incapacitating
TMJ - Osteoarthritic and degeneration
Eye - Pain severe and continuous
Neck pain - incapacitating
Facial pain - incapacitating
numbness in arms
Facial asymmetry
lose of control over face, tongue and lips
back pain - chronic

In short, TJM is not an issue to take lightly at all. It is a very serious condition. It is under diagnosed and generally is met with skepticism, both concerning it's frequency and its ability to debilitate.
01-19-2013, 02:10 AM   #12
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I didn't read any of the articles but it makes sense . When I wake up with terrible cramps
I can see that as my body was feeling the pain I would clench my teeth .

And I do have TMJ


Diagnosed= 1992 and again Feb 2012 Confirmed with
CT enterography May 2015 !!

Waiting for the ok from my Ins company to restart Remicade. Will also start Imuron to get into remission!
I know it's out there somewhere and I WILL find it!


Last edited by tots; 01-21-2013 at 12:14 AM.
03-29-2014, 08:51 PM   #13
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I had serious TMJ issues for many years before crohns diagnosis, just dealt with IBS. I was quite disabled from the severe headaches that lasted for 18 months. Finally had some oral surgery to remove some scar tissue in the joint which helped immensely. Several years later it returned but doctor had moved to the States. Saw another oral surgeon who did Botox injections. They didn't work. These days I use a memory foam pillow and that helps SO much! I recommend everyone with TMJ issues buy one. I take far less pain meds for headaches now. Funny tho, never would have thought TMJ was related to my Crohns!
03-29-2014, 09:19 PM   #14
Join Date: Jan 2013
Location: Stillwater, Oklahoma
You might consider LDA Immunotherapy for your Crohns. (its called EPD in Europe). There is a special LDA "mix" just for Crohns. I believe if you dig around on this forum there is a discussion dedicated to LDA Immunotherapy.

Overall LDA Immunotherapy has an 80% success rate.
The Science behind LDA Immunotherapy:
A List of 68 disorders that are treated with LDA Immunotherapy:
A list of MD's nationwide that use LDA Immunotherapy to heal:
03-31-2014, 11:07 PM   #15
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This is interesting. I don't have TMJ, but six years ago, I had major maxiliofacial surgery to fix my crooked jaw. This was years before I was diagnosed with crohn's, I've had problems with my teeth and jaws since I was a kid.

My understanding, but don't quote me on it, is that one cause of TMJ can be excessive jaw clenching. Perhaps us crohn's who are in pain so much of the time spend more time clenching our jaws to get ourselves through the day, which then aggravates our jaws.
It would be an interesting study to see if people who suffer regular pain from other causes have TMJ.
Crohn's has really been a blessing in disguise for me. I am more empathetic, and am a stronger person for it. It gives me a challenge. I have awesome laproscopic surgery scars and photos of the intestine piece they removed. My specialist also did research projects with my intestine, and grew cool bacteria from it!

Diagnosed with Crohn's May 2013

Terminal ileum and cecum removed December 2013

Current meds: Humera

Past meds: Prednisone and Imuran
04-01-2014, 03:05 PM   #16
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I have tmj and it gives me headaches and constant neck and jaw discomfort....
04-01-2014, 04:13 PM   #17
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Woah, i've had a clicking/painful jaw for about a year before i got crohns. I wonder if it's somehow related
04-02-2014, 08:46 AM   #18
Join Date: Apr 2014
Location: columbia, Maryland
Well , I had cracking sounds on my right side ,,,,I also had Torus mandibulari removed I know I speak on death ears... but if you google yeast youll find that 1999 the mayo clinic said 90 percent of all sinus is fungus related yet the world and docs dont treat that way... I ve had sinus sinus ..all my life.. ended up with crohns.. antibodies high and stomach problems and a fistula..

I did advanced testing ,, all the others great plans , Elisa Bio, IBD expanded panel... and many others .... I never got answers from the hospital or GI docs just camera tests and a list of pills.. I never took.. 2 years later , I have no sinus issues , no allergies no evitus(eye) no hemorrhoids , no random headaches .. All these tests pointed to yeast and reactive foods yeast eat... Killed yeast /lowered it natural antifugals as well diflucan for blood and nystatin for the gut and I havent had a problem since...

just a thought and do some research youll see no doc looks at yeast yet the two antibodies everyone seems to be high in are ASCA and AMCA which both deal with YEast

dont bye it heres some of my researh

ASCA IgA /IgG Saccharomyces wild yeast found on plants, fruits, and grains that is occasionally used for baking;
anti-Saccharomyces cerevisiae Budding yeast
cerevisiae antibodies "sugar mold" or Baker's yeast--leavening agent in baking bread converts the fermentable
sugar fungus sugars present in the dough
Brewer's yeast,
Cerevisiae- latin BEER Top-fermenting yeast ---Top-fermenting yeasts are used for brewing
ales, porters, stouts, Altbier, Kölsch, and wheat beers.
Bottom fermenting yeasts--- lager yeasts grow less rapidly than ale yeast
with less surface foam they tend to settle out to the bottom
bottom yeasts are Pilsners, Dortmunders, Märzen, Bocks, American malt liquors.

antimannobioside mannobioside pathogenic fungi, particularly Candida species
carbohydrate antibodies Candida antibodies and fungal colonization
Mannobiose is a disaccharide. It is formed by a condensation reaction, when
two mannose molecules react together
While much of the mannose used in glycosylation is believed to be derived from
glucose, digestion of many polysaccharides and glycoproteins yields mannose
phosphorylated by hexokinase to generate mannose-6-
phosphate. Mannose-6-phosphate is converted to fructose-6-phosphate
Recombinant proteins produced in yeast may be subject to mannose

Monosaccharides are the building blocks of disaccharides such as sucrose and polysaccharides (such as cellulose and starch)

Polysaccharides are long carbohydrate molecules of repeated monomer units joined together by glycosidic bonds.
Examples include storage polysaccharides such starch and glycogen, and structural polysaccharides such as cellulose & chitin.
foods---- Starch( corn potatos bannas and rice) Pectin, celliose
Celliose--- skins of apples and pears , covering of whole grains wheat , plants leaves spinach seeds & nuts contain celliose

perinuclear antineutrophil cytoplasmic

When the only positive marker is pANCA, the interpretive comment on the report will read: "Suggestive of ulcerative colitis."

When only one of ACCA, ALCA, AMCA, or gASCA is positive and pANCA is negative, the interpretive comment will read:
Pattern is not conclusive for disease behavior risk stratification."

When only one of ACCA, ALCA, AMCA, or gASCA is positive and pANCA is positive, the interpretive comment will read:
"Suggestive of inflammatory bowel disease. "Suggestive of Crohn's disease. Pattern is not conclusive for any specific disease form."

When any two of ACCA, ALCA, AMCA, or gASCA are positive and pANCA is positive or negative, the interpretive comment will read:
strictures or fistulae)."Suggestive of Crohn's disease with high risk of aggressive disease behavior (development of

When any three or more of ACCA, ALCA, AMCA, or gASCA are positive and pANCA is positive or negative, the interpretive comment
"Suggestive of Crohn's disease with the very high risk of aggressive disease behavior (development of strictures or fistulae)."

When all markers are negative, the interpretive comment on the report will read: "Pattern is not suggestive of disease."

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