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

In reponse to my list:

I am 59 and am having back and neck problems caused by Degenerative Disc
Disease. I have lost cartilage in the knees (have had both knees
replaced) and now in the wrists, causing pain and bone spurs as bone
rubs on bone.  I have been diagnosed for 2 years, but the diagnosis took
a long time-probably had CD for years.  I am wondering if this long span
of time without diagnosis has caused damage and contributed to these two
conditions.  Does anyone else have a similar situation? Madelyn VA I
really appreciated your sharing your information with me...thought
instead of a brief summary, you might benefit as I have, by reading all
the responses. Looks like late diagnosis does cause damage that shows up
to make your body "age" internally more than the average.....But I am a
better person for going on the diet-and I'm still grateful for the
diagnosis. Thanks again for sharing!  (This will be divided in several
summaries!)      Madelyn

The answer to your question is - yes, long undiagnosed celiac disease can
lead to degenerative disease of the cartilaginous parts of the body.  I
posed this question to the doctor who diagnosed my celiac disease and he
agrees that this is highly possible.  I have three titanium screws holding
my back together after two discs dried out and collapsed.  I have suffered
with back problems since the age of 12.  At 30, I ruptured two discs, at
forty I ruptured two more and then four years later the areas of previous
disc removal collapsed.  I know this is not much reassurance but I am a
living example of how the body robs itself in other areas when it does not
get the nutrition it needs.


I have the same problem. Also have been diagnosed with Osteopenia (just shy
of osteoporosis). I am 49 and was diagnosed a year and a half ago. I have had
stomach problems since a teen. My physician feels that the damage was caused
by being an undiagnosed Celiac for so many years. Bone can improve with
calcium absorption, but cartilage never returns.


I have been diagnosed since December 1998.  I have similar conditions; I
have had one knee replaced (last May) and I also have spurs in many of my
wrist and hand bones.  The orthopedic surgeon who did my knee didn't seem to
know much about celiac at all, but the hand doc I went to, when I told her I
had celiac, said that all this degeneration could have come from all the
years of undiagnosed celiac.  I am facing three hand surgeries at this point
to repair some of the damage.

By the way, I am 50.


Yes!  I am 40, diagnosed last March, but had CD for years.  I have complete
and total degeneration in all of the disks of my neck and several in my back.
 My chriopractor could not begin to understand why a healthy young woman
could have these problems, but now we know why.  Also, about 6 months ago, I
began having the strangest pains in both hands.  One hand showed a secondary
"bump" right next to my wrist bone bump, and it killed me to even use that
hand.  The other hand got a "trigger thumb" where my thumb would go straight
in the middle of the night every time I went to sleep.  Both problems were
solved (for now anyway) by going to a rheumatologist and getting one steroid
injection in each location - in fact - everything cleared up over night. He
did give me a script for hand therapy (hot wax therapy, etc.) once a week for
6 weeks, but I never bothered.  I figured I'll go through that bother if it
comes back.  He did say that many times, this type of situation never comes
back after the cortizone shots, and sometimes it does.  We'll see.  I
wondered after the fact if cortizone was safe and gf and never did find out.
Best of luck to you.  Please let me know if you find any way to build
cartiledge back aside from Glucosamine/Chondroitin, which I use now on a
daily basis.


I would think the answer to your question is YES.  I am in my sixties and was
diagnosed only a few months ago.  I have had disc degeneration for many
years.  I know that this is contributed to CD and not being diagnosed at a
young age.  I have a daughter that also has disc generation and deals with  a
lot of pain.

I've had 3 low back surgeries (last one a fusion) for degenerative disks
(herniated disks - same thing I believe.)  Last surgery was 1990 - less
than a year ago was told my neck vertebrae are spontaneously fusing - 3
already almost solid bone - can still turn my head and all.  But went to
orthopedic surgeon who said the numbness in my hands and fingers was due
to degenerative disease of neck vertebrae which is related to what
happened in low back and had to be surgically fused.  She also said
'carpal tunnel' syndrome (which she said before she saw my neck x-rays)
and suggested try 200 mg B6 daily - which, believe it or not, helped.  I
still take it and when I forget to take it too many times in a row, the
numbness gets worse.  Also when I carry something heavy or twist my
neck, I get the numbness at night mostly and also a shock-like feeling
in my hands/fingers.  It affects both hands and sometimes the last 3
fingers, sometimes the thumb and first finger - again, mostly at night
and I don't!! sleep on my arm so it falls asleep!  Since the back
surgeries, I sleep mostly on my back with a pillow under my knees.


Had celiac-related problems all my life - most serious ones affecting
nervous system, migraines, unexplained attacks of weakness, "partial
paralysis" and numbess (more serious than just fingers) and blindness.
(plus GI problems and almost constant bladder infections)  They said I had
MS when I was 19 - am 54 now - my mother died last spring after a very
lengthy neuromuscular illness which gradually left her unable to walk,
move arms or legs, talk, finally couldn't swallow anything - couldn't hold
herself upright in a chair.

It was the worst nightmare I've experienced to see her get worse and worse
over 10 years, nothing anyone could do, 'til she died.  Doctors (22 of
them!)  never knew exactly what she had.

After she died I had genetic testing for celiac (was g-f for over 10
years and not ever eating gluten again for the sake of a test!)  So
found out that BOTH my parents were probably celiac - I have 2 identical
genes HLA-DQ 0201, 0201.  I long suspected my whole family must be
celiac! (I know they say that's impossible -- come meet my family!
migraines, osteoporosis, lactose intolerant, attention deficit dis., low
back problems w. surgeries, rheumatoid arthritis, irritable bowel,
colitis, thyroid disease .....  I could go on and on ---) My aunt was
diagnosed celiac but besides her, I'm the only one who wants to hear
about celiac.  My aunt doesn't follow the diet either (is pig-headedness
a symptom?  they all got that too") But to answer your post - we all
seem to have some form of spinal deformities (oh, yeah, I was just
diagnosed w. scoliosis - never had it as a child!  my son and my brother
both have 1 leg shorter than the other and back pain ---) Yes, the
gluten-intolerance in some people can cause life-long problems with bone
and nervous system damage - much of it irreversible if ignored until
we're in our 30's, 40's and beyond.  I chair a support group here and
many of our members have back problems and arthritis:  the price we pay
for late diagnosis and years of increasing damage.

Someday I will have to have surgery to prevent total arm and hand numbness
and paralysis (per the orthopod --)  My cousins already have had the neck
surgery and many relatives have had back surgery.  I'm holding off as long
as I can.  I've also found that the longer some of us go before
eliminating gluten, the more allergies develop - discovering now that I
can't eat any dairy (not just no-lactose) and yeast is causing problems
too.  I'm scared to death for my 25 yr old son who won't take this
seriously - he has migraines, back pain, 'short leg', intermittent
diarrhea and cramps ... etc.  etc.....


There is a supplement called "glucosamine and chondroitin" that can help
rebuild cartilage.  It is readily available at the major drug chains
(Walgreen, Eckerd, etc.), discount stores (Wal-Mart, K-Mart, etc.) and
health food stores/internet stores.  You must take it for 2-3 months to
have any benefit.  There are many brands that are GF - check the
labels.Website references: http://www.arthritis.org/conditions/
alttherapies/Glucosamine.asp<A HREF="http://arthritis.about.com/cs/
glucosamine/"> http://arthritis.about.com/cs/glucosamine/</A>


I am not aware of this connection.  However, I have 4 bad lumbar discs
with a lot of degenerative disc disease.  I am 43.  Recently I sought
some experimental treatment on my back in Los Angeles (you may find some
description of this treatment at www.diskcure.com).  My parents, who
live in L.A. were present.  The neurologist inquired as to whether there
was a family history of disk disease.  There is not.  And I am the only
one who claims a gluten problem.  Not that this is conclusive of course.
after four back operations, lots of joint problems and lots of pain I
finally found out how to contol it. Most glucosamine/chondroitin doesn't
work, but Cosamin DS works very well. Add SAM-e to it and all my
problems have disappeared. And it is gradually getting better. I also
very gradually replaces the fluid in joints, whereas, ibuprofen
gradually depletes it. If you want more info let me know.

Yes, osteo arthritis is also an autoimmune disease and is associated with
celiac.


I have a similar thing going on in me. I went 40 years undiagnosed with CD
and am now just getting a handle on it. For the last ten years the majority
of my symptoms have been degenerative disc disease in the spine and
rheumatoid arthritis that jumps from joint to joint. I sometimes get it in
the shoulder and neck and then it goes to my hip and then it goes to my
toes. I haven't had to have joint replacement yet. Before I found out I was
CD last June I was having terrible pains in my right hip for years. Since I
have gone GF 99% of those pains are gone now. I still have arthritis in my
right big toe and on the left foot in the little toe, and on the lower left
back. I have occasionally been getting pains in the ribs above the heart on
the back recently. So I don't know what is going on. It seems some of the
pains got better when I went GF, and now some are coming I never had before.
I turned 40 last year. I have suffered with bad CD symptoms over the last 10
years. I was going to rheumatologists for the last ten years because it
looked like it was just rheumatoid arthritis, but I ended up in the ER last
June after eating wheat germ. My abdomen nearly ruptured the next day after
I ate the wheat germ and I spent the day in the ER back then. At the time
then the doctors started saying my odd symptoms for the last decade suddenly
made sense. I never had the classic CD symptoms. I had distended abdomen and
steatorrhea for the last decade. I had malnutrition and body wide
inflammatory problems. I did not suffer with nausea or vomiting or weight
loss however. I was if anything grossly overweight. I weighed 205 pounds but
am only 5' 9". My father was about the same height as me and he weighed 150
pounds. So after going GF in June last year now I weigh 160 pounds. I lost
40 pounds in 9 months.


I have the problem in its early stages, and only recently noticed, and have
only been gluten free 17 months, age 55 now.  Doctor and I have blamed "achy
knees" on high school cheerleading, and years of being on my feet as an
Intensive Care RN.


Yes, I also have degenerative disc deterioration in the neck and back (was
53 when diagnosed). Have had carpal tunnel surgery and periodic trouble with
rotator cuff. I also assume it's from years of undiagnosed CD. I do,
however, notice a tremendous difference in arthritic pain now that I'm
gluten free.


Well I have been gf for three years but celiac my entire life w/o knowing it.
 I was diagnosed with degenerative disc disease in my neck as well, after
having numerous x-rays and a MRI.  I will be seeing my orthopedic next week
about all of my results and my condition.  I was in a car accident and my
neck was hurt as a result however I don't know if my condition and the
accident are completely connected yet.  It may be that I was calcium
deficient for so long.  So we'll see,


He is an anti-drug person so I was totally surprised when he bought soI have
a similar thing going on in me. I went 40 years undiagnosed with CD
and am now just getting a handle on it. For the last ten years the majority
of my symptoms have been degenerative disc disease in the spine and
rheumatoid arthritis that jumps from joint to joint. I sometimes get it in
the shoulder and neck and then it goes to my hip and then it goes to my
toes. I haven't had to have joint replacement yet. Before I found out I was
CD last June I was having terrible pains in my right hip for years. Since I
have gone GF 99% of those pains are gone now. I still have arthritis in my
right big toe and on the left foot in the little toe, and on the lower left
back. I have occasionally been getting pains in the ribs above the heart on
the back recently. So I don't know what is going on. It seems some of the
pains got better when I went GF, and now some are coming I never had before.
I turned 40 last year. I have suffered with bad CD symptoms over the last 10
years. I was going to rheumatologists for the last ten years because it
looked like it was just rheumatoid arthritis, but I ended up in the ER last
June after eating wheat germ. My abdomen nearly ruptured the next day after
I ate the wheat germ and I spent the day in the ER back then. At the time
then the doctors started saying my odd symptoms for the last decade suddenly
made sense. I never had the classic CD symptoms. I had distended abdomen and
steatorrhea for the last decade. I had malnutrition and body wide
inflammatory problems. I did not suffer with nausea or vomiting or weight
loss however. I was if anything grossly overweight. I weighed 205 pounds but
am only 5' 9". My father was about the same height as me and he weighed 150
pounds. So after going GF in June last year now I weigh 160 pounds. I lost
40 pounds in 9 months.


I have the problem in its early stages, and only recently noticed, and have
only been gluten free 17 months, age 55 now.  Doctor and I have blamed "achy
knees" on high school cheerleading, and years of being on my feet as an
Intensive Care RN.


Yes, I also have degenerative disc deterioration in the neck and back (was
53 when diagnosed). Have had carpal tunnel surgery and periodic trouble with
rotator cuff. I also assume it's from years of undiagnosed CD. I do,
however, notice a tremendous difference in arthritic pain now that I'm
gluten free.


Well I have been gf for three years but celiac my entire life w/o knowing it.
 I was diagnosed with degenerative disc disease in my neck as well, after
having numerous x-rays and a MRI.  I will be seeing my orthopedic next week
about all of my results and my condition.  I was in a car accident and my
neck was hurt as a result however I don't know if my condition and the
accident are completely connected yet.  It may be that I was calcium
deficient for so long.  So we'll see,


capsules "to try" while we were at the health food store one day.  They were
glucosamine/condroitin (sp?).  He also got some of the cream to rub on his
hips at night.  He swears by this supplement and tells everyone he sees who
is having joint problems.  We have even seen medical evidence in some
publications that it actually restores some of the lost cushioning between
the bones.

I don't have any interest in this product, just am terribly glad that my
husband has received some much needed relief from his aching limbs and wish
the best for others with this product.

I would think the answer to your question is YES.  I am in my sixties and was
diagnosed only a few months ago.  I have had disc degeneration for many
years.  I know that this is contributed to CD and not being diagnosed at a
young age.  I have a daughter that also has disc generation and deals with  a
lot of pain.

I'm curious can you determine how long you think you've had CD and were
you also or have been diagnosed with malabsorption syndrome, a secondary
complication of CD.  I was diagnosed with borderline malabsorption in
November which got much worse when the GI doctor put me under three
gluten challenges during November and December.  Last September, after
sweeping my garage, I experienced extreme neck fatigue and for the next
three days, I needed assistance to get out of bed because if I even
moved my next a fraction of an inch, I would experienced excruciating
pain.  At the time, I thought that I had reinjured a whiplash injury
from 1997 resulting in a bulging disk after a red light runner totalled
my car.  My neck fatigue was so intense that to eat, I had to support
pillows under my neck or try to hold my neck up with my arms.  My old
neck brace was too soft to keep my neck from having spasms and horrible
pain.  I had to lay partially upright for three days resting my neck
almost all day.  For about two weeks, I slept partially upright so when
my husband went back to work, I could get myself out of bed.  Now, I
attribute that neck disability and a hand burn I got in April 2001 which
wouldn't heal from my malabsorption which began about April but didn't
get worse until after I went to Europe in July and eat a lot of french
bread.  My hand burn didn't start healing until October when I went
gluten-free for three weeks.  I was already seeing a GI doctor since
June but he only believed I had Lactose Intolerance and Irritable Bowel
Syndrome.  I discovered through my symptoms and a food journal as well
as reading tons of medical literature my research doctor husband brought
home for me to read, that I had Celiac Disease even before seeing my 3rd
Gastroenterologist in five years, back in November 2001.  I think that
if you remember your stools degrading in appearance (diarrhea, puffy,
fluffy, pale, spongish, etc.), you may indeed had been malabsorbing for
years.  I met a Celiac who was told she had Fibromyalgia and
Osteoporosis.  She explained that when she lifted her hip to walk, her
feet were still on the ground.  When the doctors looked into her ankle,
they discovered she had lost bone mass which settled in her ankle, and
they had to literally vacuum the bone fragments out of her foot.  Soon
after, (her late 40s) they discovered she had been suffering from Celiac
Disease.  She's now off of her crutches and seems to be physically able.
I think that they will be making many more findings about the
consequences and complications of not being diagnosed early.  My friend
who is a former nurse from Sweden says that the government there takes
Celiac D. so seriously that they test any baby they suspect who isn't
growing fast enough and they test anyone with depression, rheumatoid
arthritis, diabetes Type 1, or other psychiatric disorders and etc. for
Celiac D.  She says that now they almost see no adults with Celiac D.
because they've caught them sooner.  She says that the problem is that
now the public is so aware that many who suspect they have the disease
go gluten-free before they get the diagnosis and the government tries to
discourage people because the govt. believes a change is diet is a
drastic measure and should not be promoted unless for a definite diagnosis.


I suspect you are right. I have nerve root compression bilaterally at two
levels in my lower spine, and degenerative changes in my neck, as well as
chronic arthritis and bursitis. My symptoms go back to my teens for the
arthritis, and back to my 20s for the back and neck problems. By the time I
got treatment for my back in my 40s, I had some permanent nerve damage due to
the long-standing nature of the conditions (which my doctors previously just
called "sciatica" and told me to take aspirin). Fortunately, a year of
physical therapy got me functional again, and I have very little pain
anymore. I have a little weakness in my right leg from the nerve damage, but
it isn't too bad. I just have to be sure my foot clears the floor when I walk
or I will trip on nothing.


I didn't discover my gluten intolerance until my early 50s, so I also suspect
along with you that going a long time without the proper diagnosis or
treatment of CD contributed to this condition. My arthritic symptoms are WAY
better now that I'm off gluten, but come back if I have a gluten accident.


Well, we can't change what's already happened (to our bones, nerves
anyway) but if surgery/therapy can correct damage enough to make life
productive - then we'll be OK.

As long as we avoid the problem that caused it in the first place!
Staying G-F is small price to pay!  We can hopefully prevent continuing
degeneration of our skeletons!