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 Pain & Other Odd Things...

pondy

By pondy
in Coping with Celiac Disease

Recommended Posts

pondy Contributor
pondy
Posted

Hi everyone,

My G.I found evidence of what he guesses is Celiac disease & is currently confirming this via a blood test. I've been gluten free for 3 days.

I'm concerned about these other, seemingly unrelated, issues...

Bone pain - one month ago my pain began suddenly and severely in my right rib. The area is still super sore & tender. The pain radiates all over in my back. Is this in line with Celiac disease?

Weight loss - I've lost about 8 pounds in about a month. This is abnormal for me, as I'm almost always 155 lbs. (working out or not)

Bloody stool - red in color, sort of marbled throughout.

Dry skin, brain "fog", the blues & blahs, fatigue, hair breaking & falling out... I'm confused and worried!

My doctor tested my gall bladder, liver & kidneys - said things were "pretty normal".

Does any of this sound familiar? Thanks very much for any & all input!

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

Sure does sound familiar. Since you are done with testing you can start the diet. There is a chance of a false negative on the blood work so if the results do come back negative you would need to do a diet trial anyway. Might as well start now so you can start to heal. Go with mostly unprocessed whole foods and do keep in mind it can take some time to heal. Read as much as you can here and ask any questions you need to.

Npealer Rookie
Npealer
Posted

YES! this is what I experienced for the most part before I was diagnosed last week. I didn't have the typical stomach issues I had fatigue, brain fog, bone/joint pain that radiated my whole left arm, neuropathy, insomnia. My Doctor ran test for everything under the sun and Celiac's is what came back positive. So I feel your pain literally. I have been gluten-free for 6 days and have noticed a small improvement but still have a long way to go.

pondy Contributor
pondy
Posted
  • Author

Sure does sound familiar. Since you are done with testing you can start the diet. There is a chance of a false negative on the blood work so if the results do come back negative you would need to do a diet trial anyway. Might as well start now so you can start to heal. Go with mostly unprocessed whole foods and do keep in mind it can take some time to heal. Read as much as you can here and ask any questions you need to.

Thank you for the response - I'm grateful for this site!

I read that it can take up to two years for the intestinal villi to heal. Have others here found that to be the case? If so, is it nonsense for me to supplement with vitamins now? I mean, if I'm not absorbing nutrients then what's the point?

Sorry if the question seems silly - I'm just getting my sea legs here...

IrishHeart Veteran
IrishHeart
Posted

Welcome!

Oh Boy, is it familiar!! My rib cage hurts sometimes...it's screaming at me right now! :blink: I lost a lot of weight (90 lbs.), my hair, I am fatigued, depressed, insomnia, burning neuropathic pain..ETC ETC ETC :P and I also had NEG blood work. (Many of us do!)

Do not worry! ;)

You are in the right place for answers, help, info and encouragement from those who "get it". I could not have done this without the help of awesome people like Raven (above) and so many others. Get started right now on feeling better!! :)

eatmeat4good Enthusiast
eatmeat4good
Posted

Rib cage pain

Depression

Anxiety

Bone pain

Headaches

All this and more have disappeared on going gluten free.

I hope you feel better soon.

Welcome!

IrishHeart Veteran
IrishHeart
Posted

Rib cage pain

Depression

Anxiety

Bone pain

Headaches

All this and more have disappeared on going gluten free.

I hope you feel better soon.

Welcome!

PONDY!

See what I mean!!...here's another angel who "held my hand" since I joined the forum ...and their experiences at HEALING speak volumes....you're in the right place!! ;)

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

Celiac.com Sponsor (A8-M):


thleensd Enthusiast
thleensd
Posted

Welcome! Lot's and lots of strange ones for me, too:

Nerve pain, back pain, muscle twitches, canker sores, dizziness, fuzzy thinking. I could go on, but I won't. There's a big, bright, gluten-free light at the end of the tunnel!.

My blood test wasn't positive, BTW... "equivocal". Biopsy was positive though.

Happy eating.

Kimbalou Enthusiast
Kimbalou
Posted

I think you should go ahead and start taking vitamins and iron. I am anemic and have low Vit D. I was put on a vit d supplement. your dr. should also do iron,calcium and.vit d levels.

Meatballman Rookie
Meatballman
Posted

Rib pain especially right side.Thats how it all started for me. Doctors checked out my liver,and gallbladder also. I was also diagnosed with costrochondritis. Turns out it was Celiac all along. Sounds like you are on the right track. Hope you start feeling better. My rib pain is very intermittent now nowhere near like before.

pondy Contributor
pondy
Posted
  • Author

Thank you all for the support and encouragement! I'm so grateful for this site & everyone here... I no longer feel alone.

SaraKat Contributor
SaraKat
Posted

Left ribcage pain was my main symptom. I've been gluten-free since 9/1/10 and it is definitely better, but I still get the pain sometimes.

IrishHeart Veteran
IrishHeart
Posted

Thank you all for the support and encouragement! I'm so grateful for this site & everyone here... I no longer feel alone.

Nope, you are not alone and you will feel better. :) Truthfully, the hardest part ( for me, anyway) is being patient to see the results. I have so many symptoms and I watch for each of them to improve...some have! I just want to be all better right now!! Who doesn't right??! ;) But the best advice I got was...relax, stick to the diet and eat whole, plain foods and keep asking for help as you need it.

Take care and feel better soon!! :)

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):

  • 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.