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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,556
    • Most Online (within 30 mins)
      7,748
    dflorio
    Newest Member
    dflorio
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Scott Adams
      gluten-free Oatmeal

      By Scott Adams · Posted

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      Well said, @Mari!
    • knitty kitty
      Shingles - Could It Be Related to Gluten/ Celiac

      By knitty kitty · Posted

      Hi, @Ginger38, I've had shingles in the past.  I understand how miserable you're feeling.   Not only do i have the chickenpox virus lurking about, I also have the cold sore virus that occasionally flares with a huge cold sore on my lip when stressed or exposed to gluten.  The virus lives dormant in the nerves on the left side of my face.  It causes Bell's Palsy (resulting in drooling).  The cold sore virus is also in my eye.  My eye swells up and my vision is diminished permanently whenever I have a flare, so it's of the utmost importance to keep flares away and treat them immediately if they do happen so I don't lose any more vision.   I take the amino acid supplement L-Lysine.  Lysine messes with the replication of viruses, which helps the body fight them off.   I haven't had an outbreak for several years until this year when exceptionally stressed and contaminated, it flared up again. Lysine has been shown to be beneficial in suppression of viruses like the cold sore virus (a herpetic virus), the chickenpox virus (also a herpetic virus), as well as the HIV virus, and even the Covid virus.   I also take additional Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) because Thiamine has antiviral properties as well.   For pain, a combination of Thiamine (like TTFD or Benfotiamine or Thiamine Hydrochloride), with B12 Cobalamine, and Pyridoxine B6 have been shown to have analgesic properties which relieve pain and neuropathy.    The combination of Thiamine B1, Pyridoxine B6 and Cobalamine B12 really does work to relieve pain.  I take it for back pain from crushed vertebrae in my back.  This combination also works on other pain and neuropathy.   I usually buy a supplement that combines all three and also Riboflavin B2 called EXPLUS online.  However, it's made in Japan and the price with the tariffs added makes it really expensive now.  But the combination of Thiamine B1, Pyridoxine B6 and B12 Cobalamine (and Riboflavin B2) still work even if taken separately.   I can't take Tylenol or ibuprofen because of stomach upsets.  But I can take the vitamin combination without side effects.  However, you can take the three vitamins at the same time as other pain relievers for added benefit.  The vitamins help other pain relievers work better. I hope you will try it.  Hopeful you'll feel better quickly. Interesting Reading: Thiamine, cobalamin, locally injected alone or combination for herpetic itching: a single-center randomized controlled trial https://pubmed.ncbi.nlm.nih.gov/23887347/ Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/ Analgesic and analgesia-potentiating action of B vitamins https://pubmed.ncbi.nlm.nih.gov/12799982/ A Narrative Review of Alternative Symptomatic Treatments for Herpes Simplex Virus https://pmc.ncbi.nlm.nih.gov/articles/PMC10301284/
    • Mari
      My only proof

      By Mari · Posted

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
×
×
  • 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.