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. knitty kitty
      - 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.

      @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...
    2. Jane02
      - 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.

      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...
    3. MichaelDG
      - MichaelDG posted a topic in Board/Forum Technical Help
      0

      celiac.com support

      How do I contact someone at celiac.com concerning the cessation of my weekly e-newsletter? I had been receiving it regularly for years. When I tried to sign-up on the website, my email was not accepted. I tried again with a new email address and that was rejected as well. Thank you in advance!
    4. knitty kitty
      - 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.

      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...
    5. Scott Adams
      0

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

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,327
    • Most Online (within 30 mins)
      7,748
    dnamutant
    Newest Member
    dnamutant
    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

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

      By knitty kitty · Posted

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

      By Jane02 · Posted

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

      By knitty kitty · Posted

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

      By Scott Adams · Posted

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

      By trents · Posted

      Contact them.
×
×
  • 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.