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

Bad Muscle Aches And Joint Pain!

KurlyKat

Recommended Posts

KurlyKat Newbie
KurlyKat
Posted

I was diagnosed two years ago and have been following gluten free however, I'm not sure if I am getting hidden gluten when I eat out and this is causing me problems for the last 5 months? I partially tore a bicep hamstring tendon in Jan and it is still not fully healed. From that I have severe muscle soreness in my right arm and hand, even my two middle fingers don't bend! All this pain on my right side only. I have always been active and had no problem with muscle strength, I am a gym rat and I lift weights. I went to a nutritionist and she put me on Metagenics Inflamax which is designed for Celiac patients in mind. I have an appt for a followup with a new gastroenterologist next week. This is really frightening me. I also don't sleep well and in the morning I can hardly move, i ache allow over. anyone have any similar pain?

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

Celiac.com Sponsor (A8-M):


plantime Contributor
plantime
Posted

How much stretching do you do? You need to do lots of it, before and after exercise. It is wise to start and end your day with a stretching routine.

Bromo Newbie
Bromo
Posted
I was diagnosed two years ago and have been following gluten free however, I'm not sure if I am getting hidden gluten when I eat out and this is causing me problems for the last 5 months? I partially tore a bicep hamstring tendon in Jan and it is still not fully healed. From that I have severe muscle soreness in my right arm and hand, even my two middle fingers don't bend! All this pain on my right side only. I have always been active and had no problem with muscle strength, I am a gym rat and I lift weights. I went to a nutritionist and she put me on Metagenics Inflamax which is designed for Celiac patients in mind. I have an appt for a followup with a new gastroenterologist next week. This is really frightening me. I also don't sleep well and in the morning I can hardly move, i ache allow over. anyone have any similar pain?

I was Diagnosed about 2 months ago. I try to be very careful and eat GLUTEN Free, (I do not cheat). I have muscle aches and soreness also. It started on my left side, knees, hips neck now it is all over. I went to the Family doctor and she does not know much about Celiac Disease. I talk to the stomach dr and he did not think much about it either. I have also gained about 15 lbs in 1 1/2 months, and he did not think much about that either. I have been going the gym 3 to 4 days a week for 2 years now and have never felt like this. I also have trouble sleeping. I starting to think I am depressed. Not sure what kind of doctor to go to next. Please let me know if you get an answer!!!

BROMO

KurlyKat Newbie
KurlyKat
Posted
  • Author
I was Diagnosed about 2 months ago. I try to be very careful and eat GLUTEN Free, (I do not cheat). I have muscle aches and soreness also. It started on my left side, knees, hips neck now it is all over. I went to the Family doctor and she does not know much about Celiac Disease. I talk to the stomach dr and he did not think much about it either. I have also gained about 15 lbs in 1 1/2 months, and he did not think much about that either. I have been going the gym 3 to 4 days a week for 2 years now and have never felt like this. I also have trouble sleeping. I starting to think I am depressed. Not sure what kind of doctor to go to next. Please let me know if you get an answer!!!

BROMO

Nancym Enthusiast
Nancym
Posted

Just FYI I had joint aches all over, jaw, wrists, fingers, feet, knees, hips, back, etc... and muscle aches and spasms and tendonitis. I was diagnosed with an autoimmune arthritis called ankylosing spondylitis and put on a drug called sulfasalazine and I'm feeling much, much better!

The way I got diagnosed is I made a list of all the weird little symptoms and things that had been bugging me and went to my doctor. I made the suggestion that I might have an autoimmune condition, they did the blood tests and figured out which one it was. I just knew that I shouldn't be aching and hurting so much and I was right!

gabby Enthusiast
gabby
Posted

I looked up the product you're using and found a website that listed the ingredients which included Natural Flavors. Sometimes natural flavors include gltuen. It is worth calling the company and asking them straight up if their natural flavors are gluten free. Sometimes a product can say that it is free of gluten, but what it really means is that they themselves did not add any gluten...but it might already be present in some other ingredient (like natural flavors).

It is worth a shot to check it out. Let us know what they say

Best of luck.

key Contributor
key
Posted

It could be eating out. I almost always get gluttened when eating out. I just dont' eat out hardly ever! I get fatigue and bone pain when I am gluttened. THis was a MAJOR problem before I found out I had celiac. I was exhausted. I am fine now though. I would try and take a break from eating out for a while and see if you feel better. Hopefully it will pass. I am doing much better now.

Monica

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

Celiac.com Sponsor (A8-M):


whitball Explorer
whitball
Posted

I have had muscle pain for most of my life. The pain at times was excruciating. Muscle fatigue did not start affecting me until my early 30's. The most frustrating thing about these symptoms, is that it is hard to figure out the source of the problem. I spent nearly 15 years trying to find a reason for why I could not run more than 50 feet without experiencing muscle failure. I've had emg's, mri's, blood tests, biopsies. What I learned from all of this is that not too many people will listen, and lots of people think it's in our heads. But, finally, someone did and tested me for Celiac disease. I have not had large muscle pain for almost three months after going gluten free. My advice to you is to keep asking the questions and if you do not get the answers to solve the problem, find another doctor. Talk to your doctor about pain and how to manage it. My doctor has helped me with a variety of different options. Good luck! Tara

BoulderEm Newbie
BoulderEm
Posted

could be fibromyalgia too....

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,334
    • Most Online (within 30 mins)
      7,748
    johnfreirefr
    Newest Member
    johnfreirefr
    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.