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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      IBS-D vs Celiac

    2. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    5. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,336
    • Most Online (within 30 mins)
      7,748

    Jeffrey Yeres
    Newest Member
    Jeffrey Yeres
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • SilkieFairy
      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
×
×
  • 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.