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

Bone/joint Pain

AVR1962

By AVR1962
in Coping with Celiac Disease

Recommended Posts

AVR1962 Collaborator
AVR1962
Posted

I'm posting this out of concern for my 26 year old daughter. She has been gluten-free/dairy-free for 2 years. Was still having pain in her joints and in her bones so went off corn as well. The only grain she is taking in right now is rice. She is not eating high fructose or corn syrup. As she has takes thing out of her diet she feels like she is doing better but the bone and joint pain remain.

She was anemic as a small child. Doc told me how to pair her foods to help her absorb the iron from her food but she has always had problems with anemia. Supplements help. She does take a probiotic and a multi vitamin as well.

For the past 1 1/2 years she fought with a strep D infection and was on some very powerful antibiotics which did not knock it out until she did double therapy, 2 different antibiotics at the same time. This was just recently resolved.

I have little doubt that she is celiac and she feels the same but this is not something docs have made any connection to and she has never been tested, and doesn't want to go back on gluten for testing.

My question is, is it possible that she may have been deprived her lifetime of proper nutrients and could that now be effecting her bones? Could the bone pain and/or the strep D infection be a result of something else? She is now saying that she is having crawling sensations on her skin and muscle spasms which seems to me that she might not be absorbing nutrients even with all of the eliminating she has already done. She has gone from a size 10 to a size 3 in the time she has been gluten-free. Mostly eating a vegetarian diet with some meats.

Your thoughts are welcome, thank you!

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

Celiac.com Sponsor (A8-M):


captaincrab55 Collaborator
captaincrab55
Posted

I'm posting this out of concern for my 26 year old daughter.

My question is, is it possible that she may have been deprived her lifetime of proper nutrients and could that now be effecting her bones? Could the bone pain and/or the strep D infection be a result of something else? She is now saying that she is having crawling sensations on her skin and muscle spasms which seems to me that she might not be absorbing nutrients even with all of the eliminating she has already done. She has gone from a size 10 to a size 3 in the time she has been gluten-free. Mostly eating a vegetarian diet with some meats.

Your thoughts are welcome, thank you!

AVR1962, Has your daughter ever tested low for Vitamin D ???

AVR1962 Collaborator
AVR1962
Posted
  • Author

AVR1962, Has your daughter ever tested low for Vitamin D ???

Not sure. I do know here doc suggested she take 5,000 units daily.

captaincrab55 Collaborator
captaincrab55
Posted

Not sure. I do know here doc suggested she take 5,000 units daily.

I suffered with shoulder, neck, arm, hand, finger and other pain in the coldest month. well into spring.. Hot weather seemed to make the pain go away... Jusy last May I was diagnosed with Low Vitamin D (14.6) and started taking 50,000 units once a week... The pain vanished as my D level went up... I'm sure the extra sunshine helped too... Last lab, my D was 28 and I'll be getting another lab done next month... BTW, my blood preasue went down too, as my D level rose....

AVR1962 Collaborator
AVR1962
Posted
  • Author

I suffered with shoulder, neck, arm, hand, finger and other pain in the coldest month. well into spring.. Hot weather seemed to make the pain go away... Jusy last May I was diagnosed with Low Vitamin D (14.6) and started taking 50,000 units once a week... The pain vanished as my D level went up... I'm sure the extra sunshine helped too... Last lab, my D was 28 and I'll be getting another lab done next month... BTW, my blood preasue went down too, as my D level rose....

Awesome CaptainCrab!!!!

YoloGx Rookie
YoloGx
Posted

AVR--you should have your daughter checked out for salicylate/phenol problems too. She might be having sulpher uptake problems. Does taking epsom salt baths help relieve some of her joint pain?? There are various No Fenol products out there as well as the low salicylate etc. diet you no doubt are now aware of. If she can't always take a bath, a half hour epsom salt foot soak can really help.

I also take extra minerals as well as the vitamin D (plain cod liver oil is the best for me). As said previously I could not do without E-zorb calcium, a far more absorbable calcium you can get online that was developed by the Chinese since 20% of their population tends to get osteoporosis. I go off it at various times and always come back to it since without it for a couple of weeks using calcium citrate instead, my joints ache terribly, especially my elbows, hips, wrists and neck.

I also take the other minerals--all of which I need: magnesium citrate, trace minerals, zinc and silica drops as well as now MSM for the sulpher. All very important!! for joint pain and reducing cartalidge problems and possible osteoporosis. Recently I have started taking sulpher homeopathics as well as their cell salts -- all with good effects on my joints as well as helping me sleep.

I also find taking nattokinase greatly reduces the scar tissue in the villi and thus increases absorption of needed minerals and vitamins.

I take co-enzyme B vitamins since they go directly into the blood stream and thus are more easily absorbed (on an empty stomach).

Taking some Vit. C, and E as well as NAC and Alpha Lipoic Acid also helps.

Given she was on a long course of antibiotics, pro-biotics are a real necessity. I suggest you get the best refrigerated live cultures you can find.

If she ate more meat it also might really help. Chicken is usually the easiest to start with. Taking pancreatic enzymes with meat will help her digest it better.

Good luck!

Bea

AVR1962 Collaborator
AVR1962
Posted
  • Author

Bea, thank you. I will pass on this info for my daughter to try.

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

Celiac.com Sponsor (A8-M):


CR5442 Contributor
CR5442
Posted

Hi, I was just wondering if she has had her bloods taken recently. That might shed more light on what is causing the continuation of pain... just a thought!

domesticactivist Collaborator
domesticactivist
Posted

I think the others are right about needing more testing. I have a couple anecdotal things to add.

My partner's muscle twitching goes away when she takes concentrace mineral drops.

My son's biggest problem was bone and joint pain. Exposure to gluten even in trace amounts brings that back. How careful is she about cross contamination?

Part of her problem could be her vegetarian leanings. Would she consider adding in bone broth and meat stock based soups? They are full of readily absorbed nutrients, protein, and fat.

AVR1962 Collaborator
AVR1962
Posted
  • Author

Thanks for the responses, all wonderful thought!

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. 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...
    4. 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...
    5. Scott Adams
      - Scott Adams 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.

      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.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748
    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

    • There are no registered users currently online

  • 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.