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

Body Pain And A Drained Feeling


Kim UPST NY

Recommended Posts

Kim UPST NY Apprentice

Does any one eles free insaine bone pains? like in shoulder blades, hips, Spine? I was diagnosed Jan, 18th and I am trying to recover I eat one meal a day because I can't eat while I'm at work I feel pain , and kinda stoned by the end of the day and I just want to feel better. is this part of healing?


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



Celiac.com Sponsor (A8-M):



sillyyak Enthusiast

It is normal. I have a lot of bone pain as well. And the muscles in the backs of my legs are often sore. This is a daily thing. It is hard but things will get better. Give it time.

nederlandse Newbie

My advice also is give it time. You should stick with. Eat healthy, balanced gluten-free meals and in time you should feel better.

GL and hang in there.

It is normal. I have a lot of bone pain as well. And the muscles in the backs of my legs are often sore. This is a daily thing. It is hard but things will get better. Give it time.
Rusla Enthusiast

I have big time pain in my hips. Some days I can barely walk. I used to race walk and would like to get back to it but right now it is not feasible with the pain.

jerseyangel Proficient

I have hip pain that is especially bad in the morning. Sometimes it hurts to just roll over. The worst, though, is the neck pain that I get right at the base of my skull. That used to be horrible before I was Dx--it would be worse lying down and in the morning. Since being gluten-free, that is slowly improving.

jenvan Collaborator

Kim-

What kind of pain exactly? I think you wrote insane--so if the pain is excruitating and is affecting your ability to do everyday things or work, you should see a doctor. I deal with chronic pain due to Fibromyalgia, but I am able to continue my life and manage it with pain relieving techniques at home.

minibabe Contributor

I get a lot of pain in my joints. It is so bad sometimes that I have trouble walking. And I also walk up and down stairs all day long and carry a backpack that is about 20 pounds. I am exhausted by the end of the week. I know how you guys feel and it is really stinky :( .

Does anyone take anything for it like tyleno or motrin?

Thank you

Amanda NY


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



Celiac.com Sponsor (A8-M):



happygirl Collaborator

Before being diagnosed, I was in bed most of the day due to my unbelievable bone and muscle pain. I was seeing a rheumatologist, in particular for my severe spinal pain. I had been diagnosed with fibromyalgia, also.

Once I went gluten-free, it was an improvement!! It took me a few months to "heal" and not have the everday pain. Now, I am ok. If I eat any gluten (miniscule amounts, like from cross contamination), the bone pain comes back. As long as I am 100% gluten-free, I don't have any symptoms of arthritis or fibro (luckily). I now know that I was misdiagnosed with various issues on my way to being diagnosed with Celiac. However, others like JenVan, have pain beyond the Celiac. Since you have only been gluten-free for a couple of weeks, I would see how your symptoms improve with the gluten-free diet. Then, re-evaluate and potentially look for other diagnoses.

I sure hope you feel better-I know that the pain can make you miserable. Unfortunately, nothing helped my pain (tylenol/advil, etc. or various arthritis drugs). The only two things that gave me momentary relief were hot baths and strong massages.

julie5914 Contributor

Yeah, those seem to be the celiac sore spots: shoulder blades, neck, hips/lower back/almost glute area.

I am six months out and still have trouble, but it has gotten better since cutting out dairy. Yoga helps me as well. I do take tylenol a lot. Just don't take Ibuprofen. I got a tempupedic pillow also.

ebrbetty Rising Star

I too get pain..somedays like today my elbow burns

julie, the spots you mention are also fibro spots..funny how many ppl with celiac have fibro..I'm one myself, was diagnosed 4 years ago..makes you wonder if it really is..like IBS, fibromyalgia is another "disease" doctors diagnose when they can't find anything else wrong.

I'm hoping as I heal my body pain will get better

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. - 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.

    2. - 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.

    3. - 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.

    4. 0

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

    5. - 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.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,328
    • 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
      @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
      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
      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
      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
×
×
  • 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.