<<Disclaimer: Verify this information before applying it to your situation.>>
Thank you so very very much for the many many of you who responded to my
questions on joint pain. You've all been an immense help and I
appreciate it so much. There has been so much of interest and different
ideas that has come in and I thank you all from the bottom of my heart
for taking the time to write your experiences, etc. Basically there are
many of you that have been completely cured of joint pain on the GF diet,
and the amount of time has has really varied as far as how long it took
to get rid of the pain. Then there are others who have not been cure of
the pain of the GF diet, and have had other food sensitivities, and then
some there some poor struggling ones who haven't found relief from it
with anything yet, and still others who have Rheumatoid Arthritis and CD.
Some of you have wanted to hear what I found out so here is the
summary---it's very long so will be in several installments!
Timia
>How many of you had joint pain that was cured by the GF diet alone?
I did -- for years and years -- docs thought I was crazy or faking it,
until they started swelling. Then thought it was arthritis, but no
medicine helped.
>How long did it take before you were pain-free?
Took me a full month.
>Did you get joint pain after ingested gluten later, and how long did it
>take to get the pain after ingesting gluten?
Usually it hits the digestive tract first and I notice it right away, so
it doesn't get to the joints which seems to take longer.
>I'd be very interested in hearing ANY experiences with joint pain of any
>sort, and would be very interested to know how severe it was and all
>encompassing.
When I was young (3 years old) my mother had another baby and it was
soon after that that I began telling my mother that "my bones hurt."
The family doctor (definitely old-school) told my mother there was
nothing wrong with me and that I was just trying to get attention
because of the new baby, and told her that she should spank me every
time I "tried that trick." [This even though I had recurring diarhea
and a greatly distended stomach and skinny legs!]
Anyway, when I had been gluten free for a month - at age 44, I woke up
one morning and felt strange. I wondered if I was dead, but found that I
could move and was in my own bed. But I had the strangest sensation --
it took me a few minutes to figure it out -- NOTHING HURT! For the
first time I could ever remember nothing hurt! That wasn't the end of
all the joint paint, but it was the point at which I started having pain-
free times.
Over the 13 years I have been on the diet, the bone and joint pain is
very minimal and I am more active and feel better at 57 than I have at
any other time in my life. So there's hope for your friend!
----------------------------------------------------
Before going GF I had such severe joint pain that I could hardly walk.
It was concentrated in the hip area. I have a scoliosis, so it was
thought to be connected to that somehow. I went from orthopedists to
arthritis specialists, and tried all kinds of medications, etc. to no
avail. After going GF the pain completely disappeared. I cannot say
how long it took because by that time I had SO MANY symptoms, all of
them highly distressing and incapacitating that I felt instant relief on
so many fronts I cannot recall them all or how long it took.
Both for myself and my adult daughter the joint pain was so severe that
it was unbearable. She was 30 at the time, a very active person,
reduced to inactivity by the terrible discomfort.
Both of us are completely cured by the diet. When we have gluten
accidents the symptoms tend not to include that pain. Thank God.
-------------------------------------------------------------------------
For several years before diagnosis, my knuckles were so stiff when I
awoke in the morning that I could not make a fist. A shower, a little
action and they'd be okay, but that was one the few Celiac-related
symptoms that were bad enough before I knew what Celiac was that I
mentioned them to a doctor. I do not remember how long it took for
the pain to disappear, but it was not immediately after going gf. At
some point -- months later? possibly -- I just realized one day that
my hands were fine. The knuckles are still enlarged and misshapen,
but not stiff.
----------------------------------------------------------------------------
----
Me, me, me. I was so glad to have it go away, especially since I didn't
realize how much I had grown accustomed to living with.
----------------------------------------------------------------------------
----
I have osteoarthritis in my neck, and for a long time thought I had it
in my right knee and hand, too. After going g/f, the knee and hand pain
went away in a couple of months. I stayed g/f for a long time with no
more pain in those two areas. The last year I've not been as well
behaved as I should be, and if I ingest gluten for a few days running, I
can pretty much be assured I'm going to be using my cane again...
---------------------------------------------------------------------------
i was diagnosed w/ cd 3 months ago and still have joint pain in my
wrist and hip. i don't know if that helps at all, but i have been on the
gf diet.
---------------------------------------------------------------------------
I first had relief from joint pain when I quit corn syrup. I learned it
was the corn syrup because some kind women from my church stopped by one
day and had brought me a coca-cola, which is what I had given up. I was
in lots of pain the next day, my joints, fingers, arms and I stay in
bed. Prior to this I had given corn up because I tested positive for
it. Corn it's self gives me a system clean out more sever than gluten.
Also the night before I had testing for beef (I didn't know I would be
tested that day) I had a hamburger(I did not eat much beef as it was)
and when sitting in my doctors office we, my husband and I, were talking
about how much worst my carpal tunnel was that day. I have it bad on
both sides.
Just thinking and talking we concluded it was the beef that was causing
that pain, I had been taking over 100 codeine each month due to this
pain, I don't and haven't since stopping the beef. And I am allergic to
beef and dairy.
The day I was tested for wheat I met a woman who is allergic to all
grains.
This is fascinating in the context that she did not mention 'celiac' and
my doctor did not when I tested positive. This woman was telling me how
she knew when she's eaten wheat because her neck would get stiff. I
thought that was like 'WOW', later of course. I quit the wheat, my
eldest son by then had been off wheat and rye for about 2 or 3 years by
then. My tension in my neck and shoulders just went away. I had been
told for over 8 years, starting when I was in the military, just relax,
take time and relax. Well that wasn't the cure.
Through trial and error, mostly after the birth of my third child and
about 30 boils under and around my underarms OUCH!, we learned, me at
least that it's the wheat, rye, oats, and the barley not just for me but
my eldest and my youngest who is now one month from 3 years. He can
already say "make me sick".
With arthritis and gout the common helpful things to do, are GO TO WHOLE
FOODS. This of coarse means don't eat anything processed, with man made
chemicals and make sure you get lots of fresh green and colorful
vegetables.
Don't drink pre-made drinks as in sodas, coffees and all that fun stuff
and don't forget to stay away from alcohol and red meat and sugar and
dairy products. If you can do all that, good luck. Arthritis is where
the uric acid has built up. In order to ease the pain you have to clear
out the uric acid. Rheumatoid Arthritis is in one place and it grows
out (moves on to make the same spot plus surrounding areas hurt).
The corn syrup and beef are want did me in with joint pain. The gluten
does me in totally that every cell in my body aches. I don't like to
move or think.
----------------------------------------------------------------------------
----
My husband is the celiac in our family and he has developed low bone
mass from untreated misdiagnosed celiac disease. He has had low back
pain along with wrists and hands for a long time. He used to have
trouble with his knees and legs, but that has gotten better.
He recently had a swollen elbow that was full of fluid that he had to
have drained. The xray showed arthritis more severe than someone his
age (59) should have. He has been GF for 2 years and is now taking
Cosamin DS to help with symptoms of arthritis. He is due for another
DEXA in a month or so and we will know if the Citracal with D and
Miacalcin nasal spray have helped with the bone mass.
-----------------------------------------------------------------------------
Yes, I had joint pain long before my celiac disease was discovered. My
doctor said I had arthritis.
I suffered for about 10 years. Then my celiac disease was discovered and
I went on a gluten free diet. After about a year, my celiac symptoms
were better and I began to feel better, but I still had my arthritis.
Then, after about three years on a gluten free diet (completely) I
noticed that my arthritis was better. I told my doctor that since I
have been on a gluten free diet my arthritis is almost gone. He scoffed
and didn't think that it was the diet that made my arthritis go into
remission. He really didn't know why I was better.
But, I know that I was in a lot of pain before and now I am better.
Yes, when I accidently injest gluten, my arthritis kicks up!!
----------------------------------------------------------------------------
----
Yes I had much joint, muscle and bone pain. It is definitely related to
gluten.
It took me quite a bit longer to get over it, and it definitely recurrs
after gluten ingestion by accident.
Are you sure he's not getting some gluten somewhere?
One must be absolutely positive.
-------------------------------------------------------------------------
I had terrible pains in my ankles and legs. After one year on the diet,
they went away. It was actually bone pain. It was pretty bad, I
couldn't walk more than a few blocks. IT went away but now this is a
great many years later and I have arthritis but I never got that bone
pain in my thighs again.
IT was gone forever when I went g/f. I was tested for RA and did not
have the factor.
-------------------------------------------------------------------------
I am a firm believer in the GF diet and that it does help arthritic
symptoms. For 30 yrs. I have told my doctors what I eat is a good
barometer for my arthritic symptoms. They know best and just said I was
= being neurotic. My allergist gave me much encouragement with being
allergic to wheat, milk, rye, oats, and ect. 20 years ago. Back then
CD was not that well known. We as CD patients must start to help inform
them. My body feels every mouthful I choose to put in it. I am pain
free and the swelling in my wrist and feet is non existing when I am
following a STRICT GF diet. BUT. my problem is when I feel good I
think I can cheat on the diet. Wrong. My body screams at me to quit
the good stuff like ice creams. I do enjoy the gluten free rice and
buckwheat flour to make my own muffins and that eliminates the urge to
cheat on regular flour. For me my arthritic swelling subsides quickly.
About a week. I still have stiffness in the morning so I think I have
not cleared all the offenders out I am a sugar junkie. My allergists
said what we crave is the thing that is making us sick. Keeping a log
can be very helpful. The book THE 5 DAY ALLERGISTS RELIEF SYSTEM by
Marshal Mandell may help discover what is making him sick.
----------------------------------------------------------------------
I saw Dr. Fine speak last month. He has an arthritis condition in his
low back. He said that the gf diet helped but was not enough to
eliminate the pain. He found that eliminating ALL grains (including
corn) helped tremondously. He doesn't use any breads, pastas etc...
you might want to have your friend email him about this.
----------------------------------------------------------------------
After eliminating gluten, nightshade foods (peppers,
eggplant, tomatoes, white potatoes, pimentoes), and
sugar in any forms, my pain got much better. This
works for lupus, rhuematoid arthritis,
spondyloarthropathies, and fibromyalgia.
I have to be very faithful. If I eat just a few slivers of
green pepper, for instance, I have to stay in bed all
day because of pain. This is a horribly tough diet to
maintain, but it beats the alternative or living on pain
pills, which can ruin your living and other organs.
--------------------------------------------------------------------
I have joint pain, and the GF diet does not cure it. What works for me
is 4 glucosamine tablets in the morning, and half a glass of 100% Black
Cherry juice. That combination seems to keep the pain in check.
--------------------------------------------------------------------
I definitely get joint pain as a reaction to gluten. I did not have this
as a symptom until I had been on a gluten free diet for almost 5 years.
I had a small amount of contamination daily for about 3 months--in a
prescription medication that had changed its formula. The joint pain I
had was severe and consistent with rheumatoid arthritis--the doctor
tested for this because although I was only 27 at the time my mother
has rheumatoid
arthritis. I am grateful to say that I found out about the medication
and got off of it. The joint pain took about a month to clear up
completely. Since then I have more frequently had joint pain as a
reaction to accidental gluten ingestion. The joint pain afterwards can
vary from a day to a couple of weeks. The longer time period has
occurred twice now--both times I thought I was eating something "safe"
several times a week, and it turned out not to be safe. Both times the
the joint pain was the only symptom. Last time I suspected after 2
straight days of joint pain that there was a food culprit-and sure
enough it was my sour cream.
----------------------------------------------------------------------------
----
Well......this may not be what you want to hear, but I didn't have joint
pain until AFTER going GF. I think it is purely coincidental that
arthritis symptoms are appearing at the same time as I'm newly diagnosed
celiac! Ironic huh?
----------------------------------------------------------------------------
----
I am not answering your questions because before I went GF I did not have
joint pain, it is something I developed years later as I got older and
it has no relation to gluten in my case. My husband has it much worse
then me and he does not have CD. in our case it is just age.
----------------------------------------------------------------------
My husband (33 yo) was dx'd w/ GOUT of all things. His "gout"
disappeared when he went on the GF diet. Anything which can be
associated w/ nutritional deficiencies can be related to celiac--
including gout. His symptoms cleared up w/in about a month, and if he
has a gluten infraction, that is often his first symptom.
----------------------------------------------------------------------------
For what it's worth. I had severe knee problems for twelve years.
It cleared up two days after giving up aspartame.(nutrasweet) Haven't
had a joint pain problem since.
-----------------------------------------------------------------------
I have horrible joint pain-mostly back, shoulders, ankles. I have been
tested for Rheumatoid arthritis. Came back negative. All these symptoms
began AFTER going gluten free. My doctor has no explanation. I have had
every kind of
test and Xray. They show no reason for the pain.The dr. said it might be
fibromyalgia. I REALLY think there must be a connection between this
joint pain and celiac disease. I am only 33 yrs. old and some mornings I
feel like I'm 90.
--------------------------------------------------------------------
After being diagnosed with CD, I was diagnosed with rheumatoid arthritis.
Just woke up one morning with my first symptoms. It didn't come on
gradually...got sick one night with high, high fever and joint pain and
was diagnosed a couple of months later with RA. I've been on heavy
medications since then to keep it under control. My RA doctor thinks
celiac and RA are related. It's called an immune system gone haywire
that starts attacking itself!
-------------------------------------------------------------------------
My joint pain is not from glutens but from a variety of other foods -
dairy, potato/tomato/green/red peppers, caffeine.
It is cumulative - it may take a little several days in a row before it
is obvious that my joints/muscles hurt more. Likewise it takes several
days without for improvement. I have rechallenged myself with each one
and lo and behold the signs recur.
I found this out be having a fairly restricted diet. After eating baked
potatoes for several days in a row - I wondered why I was getting so
stiff again - I had never considered potatoes before. After that I
watched for similar signs with tomato and peppers since they are in a
similar plant family. Tea - I had been on a peppermint only tea regimen
for some time,
but wanted to get the benefit of a little caffeine to help me from
falling asleep so early in the evening. After a week my muscles were
beginning to feel like I had run 20 miles the day before. Dairy - was
the first product i eliminated after a comment from my husband about it
being a common cause of arthritis.
Simple to try and cheap - just eliminate from diet, then try it again.
-------------------------------------------------------------------------
I personally get rheumatoid arthritis-like pain in my hands within
minutes from eating or even breathing wheat. But as of now, it goes
away pretty quickly. It took a while, I don't remember how long, weeks
or a month, maybe at the beginning. I also had some other kind of joint
pain, so I don't know if that was regular arthritis, but that is all
gone, too. And hasn't come back. I have read comments by physicians
that have said that a person can get rheumatoid pain from ingesting
wheat, on www.celiac.com. The reason is that if a person eats wheat and
it gets through to the blood stream where an antibody can be made
against it (develop an allergic response), the protein is so similar to
joint tissue that the body is fooled and starts making the antibody to
the joint tissue as well, and starts destroying the joint tissue. But,
avoiding the wheat seems to stop that, at least in some people. I know
a few people with rheumatoid arthritis but they all refuse to try a
gluten free diet, so I have no idea if it gets any better at that stage.
As to other joint pains causes, there are many foods that can cause
pain, most especially the entire tomato/potato family. However, I have
discovered that as long as I haven't recently eaten anything that
destroys the lining of the intestine (including the glutens, soy, and
milk, among other things), keeping my guts parasite free, has solved
that problem. I can eat all those things without pain, and if I get
pain, knowing my diet is OK, I do another parasite purge and voila, the
pain goes away again. I usually forget that between episodes, so I go
in pain for a while before I remember to do it again. I seem to have to
do it every 4-5 months. Good luck.
----------------------------------------------------------------------------
----
> How many of you had joint pain that was cured by the GF diet alone?
I was not diagnosed with celiac disease until my early 50's, though in
looking back I now know that I had it from childhood. The last 10 years
before going gluten free, joint pain got steadily worse. I thought it
must be the effects of aging, and wasn't aware that it was at all
related to celiac disease. The degree of severity varied from day to
day - some days it was difficult to even walk.
> How long did it take before you were pain-free?
The joint pain disappeared very gradually. It was after about a year on
the gluten free diet that all the pain had vanished. The good news is
that it has not returned in the following 8 years.
> Did you get joint pain after ingested gluten later, and how long did it
> take to get the pain after ingesting gluten?
I don't recall. My gluten accidents have been kept to a minimum, and
such that the tummy distress has been so severe that any joint pains
would have been secondary.
|
