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

Recommended Posts

AVR1962 Collaborator

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

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, 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

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

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

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

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

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

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

Thanks for the responses, all wonderful thought!

Archived

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

  • 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. - trents replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

    2. - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

    3. - trents replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

    4. - Scott Adams replied to Russ H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      KAN-101 Treatment for Coeliac Disease

    5. - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Body dysmorphia experience


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,154
    • Most Online (within 30 mins)
      7,748

    bobadigilatis
    Newest Member
    bobadigilatis
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      This article does not address migraines at all.  Yes, red wine and sulfites are often mentioned in connection with migraine triggers. With me, any kind of alcoholic beverage in very modest amounts will reliably produce a migraine. Nitrous oxide generators, which are vaso dialators, also will give me migraines reliably. So, I think most of my migraines are tied to fluctuations vascular tension and blood flow to the brain. That's why the sumatriptan works so well. It is a vaso constrictor. 
    • knitty kitty
      Excessive dietary tyrosine can cause problems.  Everything in moderation.   Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese.  Sulfites cause a high histamine release.  High histamine levels are found in migraine.  Following a low histamine diet like the low histamine Autoimmune Protocol diet, a Paleo diet, helps immensely.    Sulfites and other migraine trigger foods can cause changes in the gut microbiome.  These bad bacteria can increase the incidence of migraines, increasing histamine and inflammation leading to increased gut permeability (leaky gut), SIBO, and higher systemic inflammation.   A Ketogenic diet can reduce the incidence of migraine.  A Paleo diet like the AIP diet, that restricts carbohydrates (like from starchy vegetables) becomes a ketogenic diet.  This diet also changes the microbiome, eliminating the bad bacteria and SIBO that cause an increase in histamine, inflammation and migraine.  Fewer bad bacteria reduces inflammation, lowers migraine frequency, and improves leaky gut. Since I started following the low histamine ketogenic AIP paleo diet, I rarely get migraine.  Yes, I do eat carbs occasionally now, rice or potato, but still no migraines.  Feed your body right, feed your intestinal bacteria right, you'll feel better.  Good intestinal bacteria actually make your mental health better, too.  I had to decide to change my diet drastically in order to feel better all the time, not just to satisfy my taste buds.  I chose to eat so I would feel better all the time.  I do like dark chocolate (a migraine trigger), but now I can indulge occasionally without a migraine after.   Microbiota alterations are related to migraine food triggers and inflammatory markers in chronic migraine patients with medication overuse headache https://pmc.ncbi.nlm.nih.gov/articles/PMC11546420/  
    • trents
      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
    • Scott Adams
      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."  
    • Scott Adams
      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
×
×
  • 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.