<<Disclaimer: Verify this information before applying it to your situation.>>

A lot of people with CD also have Ehlers-Danlos syndrome (EDS) and vice
versa.  However, I can't say how many; I only remember reading of a
connection.  Most people with EDS don't know they have it.  It's only
obvious in it's most extreme form: those with such extensible joints that
they can contort their bodies as you might see in a circus act.  EDS is a
genetic connective tissue disorder that causes some connective tissues to be
more elastic than normal.  EDS can manifest in a wide range of symptoms &
physical characteristics.  Since our tendons & ligaments are made of
connective tissues to hold our bones & muscles together, those with EDS
often have loose, poorly supported joints that are vulnerable to weakness,
injury, dislocation, etc.  The manifestation can vary from person to person
with one or more of the following:  loose joints ("double joints"),
unusually flexible joints, soft velvety skin, stretchy "rubber" skin, foot
&/or ankle pain, easy bruising, abnormal curvature of the spine (mild
scoliosis, sway back, poor posture), constipation (due to a hyperelastic
bowel with poor tone), etc.  Not every person with EDS has all these
characteristics, but usually one or two.  [Please note also, that other
conditions & diseases can cause of these problems.]

I have a friend who is a massage therapist.  She tells me that she can
recognize a celiac by the tone of their tissues & joints.  She's been able
to help quite a few of her patients by recommending the GF diet.  [This is
not to suggest that the GF diet is a treatment for EDS.  I also don't
suggest that EDS causes CD or vise versa.  EDS is inherited while CD is
acquired in the genetically predisposed.]

Our family initially learned that we have EDS genes when my niece, at age
15, dislocated her hip doing a Tae Kwon Do kick.  She had always amazed
everyone with her ability to contort her body.  Her orthopedist ordered her
to avoid all team sports, martial arts, yoga until she's 30 years old.  And
she's forbidden to contort her body permanently.  He said over stretching
her joints will only make them worse.  By age 30, he feels  her joints
should be more tightened so she can tolerate sports.  [This is not to
suggest that every person with EDS should stop stretching or exercising.
The treatment needs and exercise tolerance for EDS patients vary from person
to person.]

I have a mild form of EDS with soft velvety skin, constipation, foot
problems & shoulders that dislocate with slight pressure or strain.  My
adult celiac son has hypermobile joints & would often amaze his family and
friends by contorting into a pretzel when he was a teen.  He was a cross
country runner in high school & still an avid runner.  I'm 51 and EDS does
not stop me from engaging in mild sports, woodworking, gardening, etc.  I
just have to be careful (and take advantage of power tools!)

I used to work for a medical doctor (Thomas Dorman in Federal Way, WA) who
successfully treated an extreme case of EDS with prolotherapy.  He was able
to strengthen all the hypermobile joints in a woman's body.  He's one of the
few doctors in the world who is trained & proficient in this treatment.
(Dr. Dorman has a website.)

If you wish to learn more about EDS, search the web for "Ehlers-Danlos
syndrome" or "rubber skin" or "hypermobility".

Valerie in Tacoma

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