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

At What Age Did You Develop Neuropathy, Joint, Muscle Pain?

n1c0le

Recommended Posts

n1c0le Newbie
n1c0le
Posted

Hey everyone!

I'm curious at what age everyone experienced neuropathy, joint, and or muscle pain. I'm 23 years old and my doctors and I suspect Celiac, however my doctor recently told me these symptoms wouldn't come out until further down the road in undiagnosed Celiac!

Was this true for you? Did you experience these symptoms at a younger age? Did you experience them before or after other symptoms? Any details about these symptoms will help me! Even a description of what it's like for you!

Thanks, and hope everyone is feeling great today :).

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

Celiac.com Sponsor (A8-M):


Mnicole1981 Enthusiast
Mnicole1981
Posted

Well, I am 31 and I experience muscle and joint pain. I have a hard time going up stairs at times because my knees hurt so bad. I was 30 when that started.

MrsAcE Newbie
MrsAcE
Posted

I have not been diagnosed yet however my joint pain, knees, shoulders, lower back pain with spasms started when i was 26 i am now 29

codetalker Contributor
codetalker
Posted

I started experiencing bone and joint pain right around your age (about 22-23 YO). In particular, my knees gave out. It was necessary to give up jogging and any activity that involved running. Even a few seconds would cause my knees to lock up.

mushroom Proficient
mushroom
Posted

It seems more reversible if you get it early. I got it in my sixties and am on permanent RA meds for it (psoriatic arthritis).

jnh380 Rookie
jnh380
Posted

I didn't even think of it until now, but I had physical therapy 18 months ago for upper back & neck pain. Just believed it was bad posture, but now looking back and at the same time I developed neuropathy in my fingers it now all makes sense... BTW i am now 33 so this started when I was 31.

squirmingitch Veteran
squirmingitch
Posted

I began to get back pain around 30 & knees were about 5 years before that. Shoulders around 30.

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

Celiac.com Sponsor (A8-M):


MitziG Enthusiast
MitziG
Posted

For my son, he had full blown neuropathy by the age of 8.

NoKittyNo Newbie
NoKittyNo
Posted

Hmm.

I still am an, "Unknown" case, as I went for a screening last Friday, still waiting on results (expecting negative, as that seems to be the case for tests), but this is an interesting topic. If I have any sort of Gluten-Intolerance, or Celiac issues, I never would have put two and two together with joint pain.

How does one know what is normal wear and tear, and something brought on I wonder? I have had knee issues since I was 19ish, but I suspected it was overall from running, as I would run a few days a week, about an hour a time. I tried so many methods to alleviate the pain from: Hot Water Bottle, Icing, cutting down my running, taking Omega 3's, Glucosamine (always) and I began weight lifting to negate any muscle imbalances that could occur from over-development of my Quadriceps. But the pain ALWAYS came back, it could be so painful if I was working (in retail, standing) I had to hunch over and sometimes showering hurt, just standing, but then it would go away.

I haven't run actually in over a month or two, I have a Sole Treadmill cost us well over 2,000 dollars I couldn't run on, my knees, my shins - it hurt. I bought a Spin Bike (love of my life) and have been doing more Stiff-Legged Deadlifts and other hamstring exercises to maintain a balance (along with Squats, Back/Front) and my knees haven't felt this great in years, I can't even recall.

So It's hard to tell if laying off Gluten is a culprit.. or just changing my muscle structures..Honestly, if tests come back negative, this is a life-style chance I will do my damnedest to adapt to, because if I can feel normal, like other people, by just following a stricter regime? I think it's well worth it - difficult maybe, but well worth it. If it takes weeks to break a habit, I hope it takes as short of time to break this illness and reverse any ill effects.

Ahhh.. If its Celiac it's just insane isn't it? How one tiny intolerance can just.. ruin your life.

n1c0le Newbie
n1c0le
Posted
  • Author

Thanks everyone! Wow, so many symptoms at young ages. I too went to physical therapy for 4 months for suspected symmetrical knee sprains. Then my neuropathy kicked in and that's what lead me back to what doctors have suggested to me many times - celiac!

ravenwoodglass Mentor
ravenwoodglass
Posted

For me those problems developed in childhood at around age 7 or so. It got worse as years went on and became very severe by the time I was in my 30's. Most of the problems resolved within a couple years gluten free but some nerve damage remains (no pain though) and is likely permanent as I have been gluten-free for almost 10 years now.

Archived

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

Go to topic listing

  • 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. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after eating them. If it happens a few times after eating the same foods- I cut back...
    2. trents
      - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    3. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in...
    4. SilkieFairy
      - SilkieFairy posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

      After the birth of my daughter nearly 6 years ago, my stools changed. They became thin if they happened to be solid (which was rare) but most of the time it was Bristol #6 (very loose and 6-8x a day). I was on various medications and put it down to that. A few years later I went on this strict "fruit and meat" diet where I just ate meat, fruit, and squash...
    5. catnapt
      - catnapt posted a topic in Related Issues & Disorders
      0

      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

      learned I had a high PTH level in 2022 suspected to be due to low vit D got my vit D level up a bit but still have high PTH I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,321
    • Most Online (within 30 mins)
      7,748
    James Minton
    Newest Member
    James Minton
    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

    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      IBS-D vs Celiac

      By trents · Posted

      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

      After the birth of my daughter nearly 6 years ago, my stools changed. They became thin if they happened to be solid (which was rare) but most of the time it was Bristol #6 (very loose and 6-8x a day). I was on various medications and put it down to that. A few years later I went on this strict "fruit and meat" diet where I just ate meat, fruit, and squash vegetables. I noticed my stools were suddenly formed, if a bit narrow. I knew then that the diarrhea was probably food related not medication related. I tried following the fodmap diet but honestly it was just too complicated, I just lived with pooping 8x a day and wondering how I'd ever get and keep a job once my children were in school.  This past December I got my yearly bloodwork and my triglycerides were high. I looked into Dr. William Davis (wheat belly author) and he recommended going off wheat and other grains. This is the first time in my life I was reading labels to make sure there was no wheat. Within 2 weeks, not only were my stools formed and firm but I was only pooping twice a day, beautiful formed Bristol #4.  Dr. Davis allows some legumes, so I went ahead and added red lentils and beans. Nervous that the diarrhea would come back if I had IBS-D. Not only did it not come back, it just made my stools even bigger and beautiful. Still formed just with a lot more width and bulk. I've also been eating a lot of plant food like tofu, mushrooms, bell peppers, hummus etc which I thought was the cause of my diarrhea before and still, my stools are formed. In January I ran a genetics test because I knew you had to have the genes for celiac. The report came back with  DQ 2.2 plus other markers that I guess are necessary in order for it to be possible to have celiac. Apparently DQ 2.2 is the "rarer" kind but based on my report it's genetically possible for me to have celiac.  I know the next step is to bring gluten back so I can get testing but I am just not wanting to do that. After suffering with diarrhea for years I can't bring myself to do it right now. So that is where I am!   
    • catnapt
      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

      By catnapt · Posted

      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
×
×
  • 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.