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

Osteoporosis Anyone?


Claire

Recommended Posts

Claire Collaborator

There was an observation in one of the posts today regarding Osteoporosis. It reminded me that George (Nevadan) had suggested I start a new topic on the subject.

I have osteoporosis. I do not have Celiac. I have an as yet unconfirmed diagnosis of Spinocerebellar ataxia. I have been diagnosed with Type II, Delayed Food Reactions and LGS (leaky gut syndrome). After I get the ataxia diagnosis confirmed or excluded, I will test for gluten sensitivity. I am gluten-free at the direction of neurologist and CF because of either lactose or casein reaction.

Osteoporosis is a challenge - especially if you want to avoid the nearly lethal medications prescribed to counteract it.

Let's share experiences, tips, information and questions. I know I am not alone with this issue.

I will post some tips after I see if there is any interest in this subject. Claire


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



Celiac.com Sponsor (A8-M):



Nevadan Contributor
There was an observation in one of the posts today regarding Osteoporosis. It reminded me that George (Nevadan) had suggested I start a new topic on the subject.

I have osteoporosis. I do not have Celiac. I have an as yet unconfirmed diagnosis of Spinocerebellar ataxia. I have been diagnosed with Type II,  Delayed Food Reactions and LGS (leaky gut syndrome). After I get the ataxia diagnosis confirmed or excluded, I will test for gluten sensitivity. I am gluten-free at the direction of neurologist and CF because of either lactose or casein reaction.

Osteoporosis is a challenge - especially if you want to avoid the nearly lethal medications prescribed to counteract it. 

Let's share experiences, tips, information and questions. I know I am not alone with this issue.

I will post some tips after I see if there is any interest in this subject.  Claire

<{POST_SNAPBACK}>

Claire,

Yes, I'm definitely interested in hearing other folks' experience with osteo and gluten sensitivity(GS)/celiac disease.

I found out about gluten sensitivity/celiac disease by learning that celiac disease and osteo are often related. I was dx'ed w/ osteophorosis 5 yrs ago. I've since found out that via Enterolab that I have GS but I don't have the celiac disease genes but have a pair of GS genes (DQ1's). I would really like to find out if gluten has been the cause of my osteo, and I would like to know how much improvement others with osteo have seen after going gluten-free.

Thanks for the post.

George

Claire Collaborator

OSTEO TIPS

Here are some tips for dealing with osteo - or RA:

If hands are affected - do exercise with your hands in moderately hot water. Flex all fingers together, then separately. Do any hand motions that you can think of - hands must remain under water. You can get a greater range of motion under water that allows you to do motions that would otherwise be painful.

Take 1/2 tsp of Baking Soda every morning (in water). The reason - it lowers the acidity level in your stomach. Acidity is bad for bones - affects the mineral leeching process that demineralizes bone.

Avoid acid foods. You can find books on this subjec or do an online search for them. An alkaline body is the ideal.

Avoid the plants in the nightshade family. These have inflamatory qualities. Some of these are tomatoes, peppers, white potatoes etc. With a search ou can find a full list online.

Limit meat consumption. It actually takes minerals from your bones to digest it.

Check it out.

Now you will hate me! No gluten and now I am telling you not to eat a bunch of other good things. Sorry. The truth hurts. Claire

Here is an interesting website:

Osteoporosis and Osteomalacia in Patients with Celiac Disease

Open Original Shared Link

Nevadan Contributor

I would just like to add a comment to emphasize the importance of checking bone density, particularly if you are dx'd with celiac disease/gluten sensitivity - no matter your age or gender. Osteoporosis is one of the most common celiac disease/GS related problems. The sooner one discovers osteo, the more options there are for dealing with it. It is most definitely a silent disease with no symptoms until it's almost too late - usually the first symptom is a broken bone.

It's worth noting that 20% of the people dx'ed with osteo (for whatever cause) are males. I think it's very unfortunate that the medical profession has defined osteo as a female disease; 20% is not a small percentage.

A bone density test is a non-invasion x-ray like procedure. I realize a lot of celiac disease/GS folks are tired of doc's; however, this is one instance where it's worthwhile.

George

  • 1 month later...
DonnaD Apprentice
A bone density test is a non-invasion x-ray like procedure. I realize a lot of celiac disease/GS folks are tired of doc's; however, this is one instance where it's worthwhile.

George

I am sick of Doctors too! but going to see mine soon with a list of tests suggested by board members. Also I have been looking up 'Dowagers Hump' mine is getting really bad, and realised today after gettng my Entrolab results and spending a lot of time researching that this is a big indication of bone loss. ...

Does anyone else suffer from this?

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. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Son's legs shaking

    2. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Son's legs shaking

    3. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Son's legs shaking

    4. - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

    5. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Son's legs shaking

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

    • Total Members
      132,869
    • Most Online (within 30 mins)
      7,748

    MaryannHall
    Newest Member
    MaryannHall
    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

    • lizzie42
      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    • knitty kitty
      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
×
×
  • 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.