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

Any Relationship Between Celiac And Paget's?

marie06

By marie06
in Related Issues & Disorders

Recommended Posts

marie06 Rookie
marie06
Posted

I have Celiac disease. It was just diagnosed in this summer (altho I have been sick for 16 years...it has been a blessing to finally figure out what the problem was). I am fairly certain that it comes from my dads side of the family (based on their medical histories), but he will not get tested. His brother, my uncle, was just diganosed with Paget's Disease. Has anyone out there seen any correlation between Celiac and Paget's? I am kind of hoping that if there is, maybe THEN my dad will get tested. Thanks!

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted
I have Celiac disease. It was just diagnosed in this summer (altho I have been sick for 16 years...it has been a blessing to finally figure out what the problem was). I am fairly certain that it comes from my dads side of the family (based on their medical histories), but he will not get tested. His brother, my uncle, was just diganosed with Paget's Disease. Has anyone out there seen any correlation between Celiac and Paget's? I am kind of hoping that if there is, maybe THEN my dad will get tested. Thanks!

I don't know about Padget's Disease, but osteoporosis, arthritis, fibromyalgia and similar issues are quite common.

  • 3 weeks later...
marie06 Rookie
marie06
Posted
  • Author

bumping? Anyone?

I have had a headache since 1999 (everyday, 24/7). I was hoping, after the Celiac diagnosis and 100% gluten-free diet, it would go away. It hasnt. I was wondering if there is a link between Celiac and pagets.

Gentleheart Enthusiast
Gentleheart
Posted
bumping? Anyone?

I have had a headache since 1999 (everyday, 24/7). I was hoping, after the Celiac diagnosis and 100% gluten-free diet, it would go away. It hasnt. I was wondering if there is a link between Celiac and pagets.

I'm so sorry to hear about your constant headaches. I wish I could take them away. :( Maybe more time free from gluten will eventually do it. Let's hope so.

I am the only one in my family who has tested or who is even interested in being tested. So even though there are others in my family who are likely blessed with gluten sensitivity too, we may never know. Anyway, my father has definite Paget's. I have asked my doctor and he hasn't heard of any connection. But he isn't very well read on the subject of gluten, unfortunately either. There are lots of other bone and cartilage related issues in my family scattered about as well. But I'm sorry I can't give you a more definitive answer.

Personally, I do think there may very well be a connection between Pagets's and gluten issues. Just my opinion.

marie06 Rookie
marie06
Posted
  • Author
I'm so sorry to hear about your constant headaches. I wish I could take them away. :( Maybe more time free from gluten will eventually do it. Let's hope so.

I am the only one in my family who has tested or who is even interested in being tested. So even though there are others in my family who are likely blessed with gluten sensitivity too, we may never know. Anyway, my father has definite Paget's. I have asked my doctor and he hasn't heard of any connection. But he isn't very well read on the subject of gluten, unfortunately either. There are lots of other bone and cartilage related issues in my family scattered about as well. But I'm sorry I can't give you a more definitive answer.

Personally, I do think there may very well be a connection between Pagets's and gluten issues. Just my opinion.

marie06 Rookie
marie06
Posted
  • Author
I'm so sorry to hear about your constant headaches. I wish I could take them away. :( Maybe more time free from gluten will eventually do it. Let's hope so.

I am the only one in my family who has tested or who is even interested in being tested. So even though there are others in my family who are likely blessed with gluten sensitivity too, we may never know. Anyway, my father has definite Paget's. I have asked my doctor and he hasn't heard of any connection. But he isn't very well read on the subject of gluten, unfortunately either. There are lots of other bone and cartilage related issues in my family scattered about as well. But I'm sorry I can't give you a more definitive answer.

Personally, I do think there may very well be a connection between Pagets's and gluten issues. Just my opinion.

Thanks! All of my other "issues" have gone away on the gluten-free diet...and I feel SO much better, so I am happy. I keep HOPING that the headaches will go away eventually, but after 6months, I am not so sure. So, I am keeping Pagets in the back of my head (no pun intended) since my uncle has it and Pagets can cause headaches. I am going to see a doc more versed in Celiac in Jan and I will ask if he know of any Celiac/Pagets connections. I will post if he thinks there is. Thanks for your post.

Mother of Jibril Enthusiast
Mother of Jibril
Posted

I think you're smart to keep this idea in mind and pay attention to your symptoms. Celiac can explain a lot, but it doesn't explain everything.

A few months ago I was diagnosed with autoimmune hypothyroidism. Since then I've figured out I'm intolerant to gluten and corn and have low stomach acid (hypochlorhydria). I was also diagnosed with halo nevi, rosacea, and chronic dry eyes... I'm planning to get the blood test for Sjogren's antibodies later this month.

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

Celiac.com Sponsor (A8-M):


marie06 Rookie
marie06
Posted
  • Author
I think you're smart to keep this idea in mind and pay attention to your symptoms. Celiac can explain a lot, but it doesn't explain everything.

A few months ago I was diagnosed with autoimmune hypothyroidism. Since then I've figured out I'm intolerant to gluten and corn and have low stomach acid (hypochlorhydria). I was also diagnosed with halo nevi, rosacea, and chronic dry eyes... I'm planning to get the blood test for Sjogren's antibodies later this month.

Gosh, that is a lot to deal with! Hope you feel better soon!

Mother of Jibril Enthusiast
Mother of Jibril
Posted

It is a lot to deal with...

The thing is, I had SO many warning signs. Some of them I thought were just "normal" for me... dandruff, hair loss, feeling cold all the time, constipation, dry skin. Others symptoms (abdominal pain, heartburn, fatigue, depression, joint pain) I chalked up to being pregnant three times in four years and losing one child. Other things doctors knew about... low blood pressure, heavy periods, acne, weight gain, slow heart rate, dry eyes... but nobody put the pieces together! I was only able to do it once I was diagnosed with hypothyroidism (a total fluke... I was just looking for a new primary care doctor). Autoimmune disorders seem to be like that. You can be half dead before someone notices. Anyway... now I'm doing a LOT of reading and really paying attention to the signs my body is giving me :) I could have gone months or years without getting these other diagnoses.

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
      133,329
    • Most Online (within 30 mins)
      7,748
    klkarius
    Newest Member
    klkarius
    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.