Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Stiffness


charlotte

Recommended Posts

charlotte Newbie

Does anybody know of a condition realted to celiac desease when the individual has stiffness or difficulty moving the knees or legs in the beginning but can move along easily after the initial motion - no pain involved.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



tiredofdoctors Enthusiast

I don't have celiac, just GI, so I'm don't have any knowledge of it personally, nor have I read anything that mentions that. My question would be, how long does the stiffness in your knee last before it goes away? Do you have it in any other joints in your body? Do you have any other autoimmune diseases? That's about my two cents' worth :blink: Sorry I couldn't be more help :ph34r: . . . . Lynne

i canary Rookie

Charlotte,

I thought I knew until you said no pain. I have fibromyalgia. I'm stiff as a board at first, but once I get walking I usually can walk it out, but there is pain involved.

Canary

Guest Robbin

I have seen on other posts that swelling and puffiness are a problem for alot of people when glutened. I have FM too, so the stiffness is painful, but maybe if someone doesn't have any other condition with the celiac they would just get the stiffness and swelling? Maybe water retention? How is your blood pressure? (Just throwing out ideas) Take care,

Robbin

DonnaD Apprentice

I have FM too its quite a common additional diagnosis on this forum, but my pain is upper body,back, neck,shoulders. I'm Gluten intolerant. My sister has the same.

My knees are stiff first thing in the morning and make a crunching noise going up stairs (not down). They feel 'tired ' and my leg upper leg muscels feel weak, rather than pain unless I really overdo it (lots of stairs etc) I'v just had them x-rayed, the technician said that the x-rays ldidn't look like there was any arthritis (although my sister has and is waiting for some surgery) but I have to wait for my Doctor to get the full report. Being gluten-free has helped most of my other symptoms, especially the chronic pain but my knees are still getting slowly worse (and louder!)

My 11to has celiac disease and her knees hurt, creak and swell up but only if she has raw peppers, tomatoes and potatoe chips. (Nighshade veg)

I don't know if this is any help to you Charlotte.

jnifred Explorer

the no pain you mentioned kind of gets me, but sometimes when my Rhuematoid Arthirits flares up it doesn't necessarily hurt, just a hard to move the joint affected. And it always gets better as I use it and as the day goes on. And I have begun to notice that when I get glutened my RA flares up. So it could be along those lines.....

slpinsd Contributor

hmmmmmmm, so I guess I'm not the only one. I have had problems with my knees feeling really tight in the morning, as with my elbows, but it gets better as I start walking. Now that i think of it, it has mostly gone away since going gluten-free. I guess this is a symptom of getting glutened?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Linda352 Rookie
I have FM too its quite a common additional diagnosis on this forum, but my pain is upper body,back, neck,shoulders. I'm Gluten intolerant. My sister has the same.

Donna, I am so happy to have found your thread as I have the same symptoms..upper back, neck, shoulders. I was diagnosed with disc degeneration in my cervical spine 10 yrs ago and nothing has really helped. After being told that I would have to learn to live with this I lost my faith in the medical profession and started doing my own research. It wasn't until this past summer when I put myself on the South Beach Diet that I discovered how suddenly I was pain free while on Phase 1 of the diet which is very strict. :) This is when I began to learn about the gluten factor. It bugs the heck out of me that doctors don't seem to have a clue about this possibility being a factor in many illnesses or symptoms :angry: . I am not planning on being tested to have this confirmed as I can't see shelling out the money if it might tell me that I'm not when I know I feel much better doing this :rolleyes: I am glad to have found this site this week and to also find someone else who has similar symptoms as myself :) . Just wondering how you got to the point of being diagnosed with having this problem with gluten and how long have you been gluten-free? Do you also find this works good for you? By the way, I am 54. I've just ordered online a couple of gluten-free cookbooks so I can still make some hopefully, decent meals for my DH :lol:

Sincerely, Linda/NJ

jerseyangel Proficient

Hi Linda--welcome :) Where in NJ are you from?

I also had a lot of neck and shoulder pain. It was much worse in the morning--easing up only after a shower. It is much improved after being gluten-free. Before, no pain relievers would help and accupuncture also failed to ease it. I also have the same thing in my hips. The knee pain is different--it will come on after exertion, and make it painful to climb stairs, etc. Gluten seems to have no effect on it.

Linda352 Rookie
Hi Linda--welcome :) Where in NJ are you from?

I also had a lot of neck and shoulder pain. It was much worse in the morning--easing up only after a shower. It is much improved after being gluten-free. Before, no pain relievers would help and accupuncture also failed to ease it. I also have the same thing in my hips. The knee pain is different--it will come on after exertion, and make it painful to climb stairs, etc. Gluten seems to have no effect on it.

:D Hi Patti! I live in the southern part of Monmouth County. Where are you located? I used to wake up very stiff in the neck/shoulder area. I also used to sleep with a cervical neck thing as I just couldn't get comfortable without it. The only dr. that has given me satifaction over the years is my chiropractor who I've gone to faithfully for about 5 yrs now. There were times when I didn't think she was doing much for me but I now know that she is as I am not as bad as I used to be. Now I find that I only seem to hurt after I've eaten something that I probably shouldn't have. I'm still learning about all the foods that I shouldn't eat and a lot of times it seems to be trial and error. This is not an easy venture ;) At times I have considered accupuncture but maybe I won't if it didn't help you any. Sorry to hear that the gluten issue doesn't help you with your knee problem. I try to keep active through walking but it's been so cold here lately that it's tough getting out there to do it :P I do Pilates a couple of times during the week to keep myself from getting too stiff all over. I love to garden when the weather is right but I don't like that I haven't been able to do all that I used to do in a day. I'm hoping that if I can get into the groove of this gluten free diet maybe I'll be better for the next gardening season :) Patti, how long have you been gluten free and how did you learn that you had this problem?

Looking forward to corresponding with you and others here. Thanks for the Welcome :) !

Linda/NJ

jnifred Explorer

that is so strange......the back, neck, shoulders thing. I was originally diagnosed with Ankylosing Spondylitis by my first Rhuematologist b/c my back/neck/shoulders only hurt when I would lie down to rest or if I sat too long etc. I also had swelling in a few joints so he thought it could also be RA, which is what I tell people, b/c if I say AS they look at me cross eyed and say HUH?, so after playing with a ton of different meds, we finally went to Enbrel which helped a ton, I still had the neck and shoulder thing though, and so when we moved my new RA doc gave me muscle relaxers to help me sleep at night. Did wonders for me.

So now, I go gluten free about 3-4 months ago. I have noticed that I don't need the muscle relaxers as often, my RA is better, flares are within a week of eating gluten...I am wondering if I have been gluten intolerant this whole time (10 yrs) and just didn't know what to look for. I have known for years that bread made me feel "heavy"...could never eat much, even though I love bread.

I never linked the shoulder/neck/back pain to this until now, and it has been better the last few months. So glad you all posted this....

DonnaD Apprentice
:D ? I used to wake up very stiff in the neck/shoulder area. I also used to sleep with a cervical neck thing as I just couldn't get comfortable without it. The only dr. that has given me satifaction over the years is my chiropractor who I've gone to faithfully for about 5 yrs now. Now I find that I only seem to hurt after I've eaten something that I probably shouldn't have. I'm still learning about all the foods that I shouldn't eat and a lot of times it seems to be trial and error. This is not an easy venture ;) At times I have considered accupuncture but maybe I won't if it didn't help you any. Sorry to hear that the gluten issue doesn't help you with your knee problem. I try to keep active through walking but it's been so cold here lately that it's tough getting out there to do it :P I do Pilates a couple of times during the week to keep myself from getting too stiff all over. I love to garden when the weather is right but I don't like that I haven't been able to do all that I used to do in a day. I'm hoping that if I can get into the groove of this gluten free diet maybe I'll be better for the next gardening season :) Patti, how long have you been gluten free and how did you learn that you had this problem?

Looking forward to corresponding with you and others here. Thanks for the Welcome :) !

Linda/NJ

Hi Linda, welcome you could not be in a better place!

We could be twins! I had to retire (at 40) from my Accounts Manager position due to my health. I'v also had accupuncture.I have been going to a chiroprator for 15 years he is the only one that ever made me feel better. I have a home gym which helps a bit. I also hate the cold, we are moving to a warmer country this year so my quality of life can improve. I am seeing a new doc tomorrow in London I hope he will look at me as a whole. I have joined the dots so much on this forum in the last few weeks. I joined when my 11yo daughter was Dx celiac by biopsy in November 2005. I knew I had problems with wheat and dairy (York tests) I was stunned to find the link between gluten/neurological problems/digestive issues/chronic fatigue/fibromyalgia/IBS.

I have a beautiful raised bed veg garden, it breakes my heart that i am not up to doing it all myself and that for my health I need to in a warm climate. We are selling our dream Tudor 1575 Cottage, 600yo oak beams, inglenooks fireplaces, that we have spent 2 years renovating for a pool and some sun! I am gutted. This forum is possibly the best thing you will ever discover in your quest for good health.

Take care,

Donna

jerseyangel Proficient

Linda--I live in northwest Burlington County. Our weather sure took a cold turn-huh? I love Pilates--I have a Premier XP machine here at home. It really does help with stiffness, and is such a gentle workout. I like to garden, too--we don't have a big yard but I have a raised perinneal bed in the front that I'm proud of. I have to do any outside work in the early AM as I am pretty sensitive to the sun and heat. I hear ya about the lack of energy, but I seem to be slowly getting some back. The only thing is that I'm tired by 7 or so every night! I had been sick for about 20 years but misdiagnosed many times. I had a surgery in 2004, and right after, my GI symptoms got much worse, along with tingling, numbness, brain fog, worstening anemia, severe fatigue and a 15 lb. weight loss. I did some research on my own after seeing a Kineisiologist who told me I should not eat wheat, oats, barley, rye, dairy, corn or soy. I took what I suspected to a gastro. That's when I was finally Dx.

I'm glad you found us here--just let us know how we can help :)

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,635
    • Most Online (within 30 mins)
      7,748

    dysmathers
    Newest Member
    dysmathers
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • deanna1ynne
      Dd10 was tested for celiac four years ago bc two siblings were dx’d (positive labs and biopsies). Her results at the time were positive ema  and ttg (7x the UL), but a negative biopsy. We checked again three months later and her ttg was still positive (4x the UL), but ema and biopsy were negative. Doc said it was “potential celiac” and to keep eating gluten, but we were concerned about harming her growth and development while young and had her go gluten-free because we felt the labs and ema in particular were very suggestive of early celiac, despite the negative biopsies. She also had stomach aches and lethargy when eating it. We just felt it’d be better to be safe than sorry. Now, four years later, she doesn’t want to be gluten-free if she doesn’t “have to be,” so underwent a 12 week gluten challenge. She had labs done before starting and all looked great (celiac panel all negative, as expected.) Surprisingly, she experienced no noticeable symptoms when she began eating gluten again, which we felt was a positive sign. However, 12 weeks in, her labs are positive again (ttg 4x the UL and ema positive again as well). Doc says that since she feels fine and her previous two biopsies showed nothing, she can just keep eating gluten and we could maybe biopsy again in two years. I was looking up the ema test and the probability of having not just one but two false positives, and it seems ridiculously low.  Any advice? Would you biopsy again? She’s old enough at this point that I really feel I need her buy-in to keep her gluten-free, and she feels that if the doc says it’s fine, then that’s the final word — which makes me inclined to biopsy again and hope that it actually shows damage this time (not because I want her to have celiac like her sisters, but because I kind of think she already does have it, and seeing the damage now would save her more severe damage in the long run that would come from just continuing to eat gluten for a few more years before testing again.)  Our doc is great - we really like him. But we are very confused and want to protect her. One of her older sibs stopped growing and has lots of teeth problems and all that jazz from not catching the celiac disease sooner, and we don’t want to get to that point with the younger sis. fwiw- she doesn’t mind the biopsy at all. It’s at a children’s hospital and she thinks it’s kind of fun. So it’s not like that would stress her out or anything.
    • Inkie
      Thanks for the replies. I already use a gluten-free brand of buckwheat flakes I occasionally get itchy bumps. I'm still reviewing all my food products. I occasionally eat prepackaged gluten-free crackers and cookies, so I'll stop using those. I use buckwheat flakes and Doves Farm flour as a base for baking. Would you recommend eliminating those as well? It's a constant search.
    • Wheatwacked
      Gluten free food is not fortified with vitamins and minerals as regular food is.  Vitamin deficiencies are common especially in recently diagnosed persons,  Get a 25(OH)Vitamin D blood test. And work on raising it.  The safe upper blood level is around 200 nmol/L.    "Low serum levels of 25(OH)D have been associated with increased risk of autoimmune disease onset and/or high disease activity. The role of vitamin D in autoimmune diseases   🏋️‍♂️Good job!   I find the commercial milk will give me mild stomach burn at night, while pasture/grassfed only milk does not bother me at all.  While you are healing, listen to your body.  If it hurts to eat something, eat something else.  You may be able to eat it later, or maybe it is just not good for you.  Lower your Omega 6 to 3 ratio of what you eat.  Most omega 6 fatty acids are inflammation causing.    The standard american diet omega 6:3 ratio is estimated at upward of 14:1.  Thats why fish oil works
    • Inkie
      I  notice a reaction to tea bags, possibly due to gluten or other substances. Is this recognizable?
    • trents
      The blood tests you had done are not the main ones. The two main ones are the "Total IGA" (to check for IGA deficiency) and the "TTG-IGA". Current guidelines for the "gluten challenge" when people have been gluten free for a significant time period are the daily consumption of at least10g of gluten (about the amount in 4-6 slices of wheat bread) for at least two weeks leading up to the day of the blood draw. That should give you some perspective.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.