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

What Does You Glutening Knee Pain Feel Like?


CBaker88

Recommended Posts

CBaker88 Newbie

Hello everyone,

 

I posted my story yesterday under a different heading about how I have lots of celiac symptoms that onset about 5 months ago but have had a negative blood test/biopsy - diagnosis. Going off of gluten has helped immensely w/ the bloating, constipation, intestinal cramps, weird cold sensations in abdomen/leg and the rash itchiness isn't nearly as bad, but I still have bad joint pain in both of my knees. I had an MRI of my right knee which showed nothing structurally wrong at all. Anyway, for those who have knee pain due to celiac, what does it feel like? I've had pain in my right knee for 5 months now which won't let up, and my left knee for about 3-4 weeks. It seems to be focused at the interior side of the upper part of the knee, kind of around the upper part of the knee cap, but it fluctuates. Sometimes the pain is below the knee, sometimes to the side, sometimes on the outside. It's usually a sharp pain, but I do get this burning feeling sometimes. It usually doesn't bother me unless I'm using them, so if I'm laying down it's not really as noticeable. I'm not sure this is due to celiac, but I think there's a high likelihood. I just started going back the gym for the first time in 3 months to work upper body again, but my knees aren't too happy about it. But honestly I'm sick of not working out, so I'll just suffer with the pain. What have been your experiences?


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



Celiac.com Sponsor (A8-M):



dilettantesteph Collaborator

My knee pain seemed like arthritis. It didn't hurt lying down unless someone put weight on the kneecap. It went away after being gluten free some time, maybe 6 months, I can't remember any more. I was still able to exercise gently, but it was an annoying constant ache. I also had ankle pain bad enough to quit ballet lessons and swollen and painful finger joints. It all went away when I went gluten free. I hope you get rid of your pain too.

  • 1 month later...
r0ckah0l1c Apprentice

I wish I could explain it but it is sort of like a tired achy feeling, like your knees are asleep but it's so severe that it causes pain especially when you bend them or step down. I remember tingling and extreme weakness with the pain and sometimes it would happen at in coordinance with hip pains. Sometimes it would feel like an on-going jab in the funny bone but in your knees. That is the best way I can describe it. Sometimes I would have trouble fully extending my legs or bending them properly.

  • 3 weeks later...
Anna and Marie Newbie

Hey!

The pain that I have with celiac reactions is kind of like I'm loose-jointed, watery almost. The pain shoots around, behind, and beside my knees, it's mind blowing. I hate running with reactions because my legs feel as if they're leaving me behind, I feel so heavy but thats probably the edema I have with reactions. But yes, I have that problem. Now I have arthritus in my knees so I may be a liitle off on the description. It shoud go away, mine was reaallllly slow in doing so!, unless you have other conditions. Good luck,

~Anna

 

P.S. Looking back at your original post, yes that is exactly what happens to me! It sounds like Celiac to me!

  • 1 month later...
JillianLindsay Enthusiast

Mine is bad and getting worse!! I've only been gluten free for.... 5 whole days lol

 

I play soccer and have had terrible knee pain for the past 5-6 weeks. For me it's primarily the bottom of my knee cap and the inside of my knee. It seems to radiate to the outside and underneath my knee when it's at its worst and only hurts when I run. I've been icing them every day because I'm still playing soccer through the pain but I'm hoping the gluten-free diet will help my joint pain.

 

I also have fallen arches and got new orthotics for my cleats to see if that would help too.

 

Good luck!

 

 

CBaker88 said:
Hello everyone,

 

I posted my story yesterday under a different heading about how I have lots of celiac symptoms that onset about 5 months ago but have had a negative blood test/biopsy - diagnosis. Going off of gluten has helped immensely w/ the bloating, constipation, intestinal cramps, weird cold sensations in abdomen/leg and the rash itchiness isn't nearly as bad, but I still have bad joint pain in both of my knees. I had an MRI of my right knee which showed nothing structurally wrong at all. Anyway, for those who have knee pain due to celiac, what does it feel like? I've had pain in my right knee for 5 months now which won't let up, and my left knee for about 3-4 weeks. It seems to be focused at the interior side of the upper part of the knee, kind of around the upper part of the knee cap, but it fluctuates. Sometimes the pain is below the knee, sometimes to the side, sometimes on the outside. It's usually a sharp pain, but I do get this burning feeling sometimes. It usually doesn't bother me unless I'm using them, so if I'm laying down it's not really as noticeable. I'm not sure this is due to celiac, but I think there's a high likelihood. I just started going back the gym for the first time in 3 months to work upper body again, but my knees aren't too happy about it. But honestly I'm sick of not working out, so I'll just suffer with the pain. What have been your experiences?

 

bittykitty Rookie

My pain alternated between a jabbing pain,like something had torn,and a dull ache.My hips would occasionally feel like they were locking in place and didn't want to move.Had tests done for 10 years and couldn't figure out why it could look fine,but hurt that badly.Now I know.

tiredofbeingsickandtired Apprentice

Thsi was why I stopped running, had one doc say that she was sure I had torn my acl...then the second one said it looked perfectly fine. I would have spells where one or both of my knees would swell and hurt terribly. I'm taking it slow but looking forward to getting back into running as I heal.


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



Celiac.com Sponsor (A8-M):



JillianLindsay Enthusiast

My pain is getting worse and it's getting very frustrating because I love playing soccer so much!

 

Something I realized was that I was indiscriminately taking advil before my matches without reading the ingredients and checking for gluten!

 

 

CBaker88 said:
Hello everyone,

 

I posted my story yesterday under a different heading about how I have lots of celiac symptoms that onset about 5 months ago but have had a negative blood test/biopsy - diagnosis. Going off of gluten has helped immensely w/ the bloating, constipation, intestinal cramps, weird cold sensations in abdomen/leg and the rash itchiness isn't nearly as bad, but I still have bad joint pain in both of my knees. I had an MRI of my right knee which showed nothing structurally wrong at all. Anyway, for those who have knee pain due to celiac, what does it feel like? I've had pain in my right knee for 5 months now which won't let up, and my left knee for about 3-4 weeks. It seems to be focused at the interior side of the upper part of the knee, kind of around the upper part of the knee cap, but it fluctuates. Sometimes the pain is below the knee, sometimes to the side, sometimes on the outside. It's usually a sharp pain, but I do get this burning feeling sometimes. It usually doesn't bother me unless I'm using them, so if I'm laying down it's not really as noticeable. I'm not sure this is due to celiac, but I think there's a high likelihood. I just started going back the gym for the first time in 3 months to work upper body again, but my knees aren't too happy about it. But honestly I'm sick of not working out, so I'll just suffer with the pain. What have been your experiences?

  • 4 weeks later...
tiredofbeingsickandtired Apprentice

arrghghh, I had a slip up in VBS Tuesday night and most likely glutened myself considering how sick I was. My feet hurt and my left knee is swollen and feels like my knee cap is locking-ouch it hurts. I'd started back on my couch to 5k program awhile back with no pain, so I'm hoping that this knee pain is connected to the glutening and not to the running..and that it will go away. I'm staying off my feet for a few hours this morning. I want to run but I'm going to give it till Tues (when I have dogs to run) and see how well it heals. I may go to the gym and get in the pool later. I'm just taking tylenol arthritis, trying to stay off ibuprophen because I wonder if it makes my joints swell up more.

Hope you can play soccer soon, praying that it heals up and stays that way!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,029
    • Most Online (within 30 mins)
      7,748

    Nancy N Rosen
    Newest Member
    Nancy N Rosen
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
    • sleuth
      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
×
×
  • 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.