<<Disclaimer: Verify this information before applying it to your situation.>>
Several more people told me their doctor or therapist considers there to be
an association with loose ligaments and CD. One mentioned the leaky heart
valve as an other indicator of tissue dysfunction in CD's.
For those who asked for more info on prolotherapy and Ehlers-Danlos Symdrome,
here are descriptions and web sites provided from listmates.
I have been a diagnosed celiac for one year. Last year, I was also told by a
physical therapist who specializes in SI joints that I have a "loose pelvic
girdle," meaning that the ligaments around my pelvic area are loose. This
has been a life long problem, with one surgery and many, many other
treatments with no relief. However, last year, I underwent prolotherapy (a
series of injections of an irritant so that my immune system would kick in to
strengthen and thicken the ligaments). It was a painful procedure, taking
about 6 months, but it has worked. No pain and no slippage for one year now!
I had not considered that this was connected to celiacs disease and would be
interested in hearing about other celiacs with a similar problem.
Prolotherapy is referred to as an "investigative" procedure. It has been
performed for 50 years, and with good results, but for some reason never made
it into the mainstream of medicine. My doctor (pain management) says it's
because the pharmaceuticals can't capitalize on it and make any money.
My orthopedic surgeon referred me to both a physical therapist who
specializes in sacroiliac joint problems (Middleburg, VA) and also to a pain
management doctor who specializes in prolotherapy (also in Northern VA).
These two individuals have really changed my life! I have to admit that I
was very skeptical about the treatment as had numerous treatments over the
years that didn't work. I had a major distrust of physical therapists as
they always tried to treat the symptoms and never got down to the root
problem.
The physical therapist worked with me to put the hip joints back in place,
and also to teach me some exercises to strengthen the muscles in the pelvic
region. He also worked my entire body mechanics and taught me how to walk
properly in order to keep the pelvic area stablized. This is a program that
he has put together himself. We talked at length about the average physical
therapist, and the kinds of treatment that I've had in the past that did no
good. He works in close concert with a pain management doctor in the
Northern Virginia area. They've done a lot of research, teach at conferences
and do workshops.
The pain management doctor was the one who actually did the injections. I
had 25-30 injections at a time, every two to three weeks over a period of
approximately 6 months. There was a rest period of 2 months during that
time. It is uncomfortable and I sometimes had trouble walking for about a
half a day, but then would return to normal. I was able to do the injections
in the morning on my way into work. Sometimes I would have to stand at my
desk, but gradually the discomfort would dissipate and I was fine.
The injections were a "recipe" of cod liver oil and sugar water. Yes, I know
that it sounds like quackery. The idea behind this, however, is that an
irritant is injected into several places up and down the ligaments. Then the
body attacks it and promotes a healing, through thickening and strengthening
of the ligaments. Remember that muscles can be strengthened through
exercise, but ligaments cannot.
It will be one year this December since my last treatment. I have had no
pain or slippage since that time! My pain management doctor said that the
healing would continue for a period of 2 years, so I expect that it will only
get better this next year. He did tell me to take extra doses of magnesium
and zinc to promote healing, which I have continued.
You can find out more about prolotherapy by going to www.yahoo.com. The
former Surgeon General, C.Everett Koop underwent prolotherapy for his back
several years ago, with such good results that he got into to the practice as
well.
I was so relieved to find something that worked, as had been suffering with
this for close to 30 years! Obviously, the key is to find the right medical
professionals.
My doctor for prolotherapy treatments is: Dr. Mayo Friedlis, Center for
Physical Medicine and Pain Management. There are four locations in the
Northern Virginia area:
Fairfax: 703-560-8280
Franconia: 703-971-4604
Herndon: 703-709-0832
Skyline: 703-998-8824
My physical therapist is: Richard Jackson, P.T., O.C.S., Middleburg Sports
and Orthopedic, 204 E. Federal Street, Middleburg, VA 20118 (540-687-6565).
I believe he has opened an office in Centreville, VA too.
My insurance paid for the physical therapy, but not the prolotherapy.
However, when I think of the years of unsuccessful treatment and pain, I was
very glad to find something that worked!
See: www.ednf.org for Ehlers-Danlos syndrome and www.prolotherapy.com
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